History

Saturday, December 31, 2005 9:13 PM CST

Hi all......and a happy,healthy and blessed new year to all of you who have followed,prayed,laughed and cried during our journey. At this time, I ask all of you to pray for those who suffer any need; weather it be physical, spiritual or emotional. Let the light of God shine down upon them now and forever.
Update on the kids.............Laura did very well with her ears and the placement of the tubes on Wednesday. One ear had already cleared up on its own,but the doctor put them in both anyway. They will fall out on their own in 6 to 12 months.Laura is hearing well and looks the best she has looked for sometime.Matt is still the energizer bunny. Even a runny nose earlier this week cannot stop this child. He is a ball of energy from the time he wakes up until he goes to bed, and then he gets more energy, unless he has been outside all day(which has not been very often lately). The good thing is once you get him to fall asleep, we usually don't hear from him until 7:30 am. Anthony has not coughed since we were in the hospital four weeks ago. He looks good, probably the best since his transplant. He has been abit tired as of late;we think it may be the Levaquin, which he has been on for 20 days for the ear and sinus infection. His last dose is tomorrow and he will have a repeat scan of the chest and sinuses on Jan. 10th. It was nice to see him work with Andie (his P.T.) this week. She has brought him so far along over the past five months. I am thrilled how much stronger his neck and trunk are getting. As we said before, these two areas are key so he can get to the big stuff. I try so hard and put so much energy into anthony's therapy, the emotional end of the progress or lack of it can be so exhausting at times. It is nice to take a step back and se how he has progressed by watching him with others.
The holidays have been nice, but getting back into a routine without all the distractions is the best thing for our home, especially for anthony. Obviously ,so many things have changed in our lives. Michele or I do not get out very much except to work and to Target to pick up needed supplies. Friendships have withered somewhat because of time constraints and the time needed to care for and do Anthony's therapies. Traditions have changed. Tonight, New Year's Eve, we are alone for the first time in a long time, but the five of us together is still and will always be a party and a blessing. Christmas was nice, but seemed empty to Michele and I as we held back the tears until we got home, because of the pain inside of not being able to share this day with our son. But, as we sat at the table tonight to eat dinner, we are thankful for where we are and the belief that 2006 will be the year of complete healing, especially for anthony. We are in such a much better place tonight then we were a year ago, and with our determination and faith, by this time next year, life will be brighter and better for the Tomaino family.
P.S.- Nannie "Fran" Mauro is doing very well. She has regained her complete memory and ability to talk, along with a noted return of function to her right arm and leg.Like i have always said, this is one tough lady!! She will continue to stay in rehab for the time being, and we will keep you posted.
Michele and I are so thankful for our children, family and friends;all of you who have shared this journey. Tonight as 2005 ends and the new year begins, we would now like to thank you for sharing your hearts, faith,love and time with us over the past year and a-half. May God's blessing shine down upon you and your families in the year 2006.

Love,

Mike and Michele.

Saturday, December 24, 2005 7:21 PM CST

I guess it’s about time I updated. First of all, our family wishes all of you a very merry Christmas. We hope your day is blessed.

We went to clinic this past Tuesday. We weren’t due for another week, but we wanted the kids seen by an ear/nose/throat (ENT) doctor and they were able to see the kids then. Transplant clinic went well…very well for Matthew and Laura. They are officially off all transplant meds!! I got to see Anthony’s CT scans of his sinus and I was very surprised how significant an infection he has. He isn’t as symptomatic as he has been in the past. The transplant docs will converse with the ENT doc and figure out a plan for rechecking his sinuses.

So, on to the ENT visit. Laura definitely needs tubes in both ears and will be done Wednesday, December 28. He suctioned out drainage from her outer ear (we all got to watch on the TV—how gross!). Her eardrum had closed, so he wasn’t able to get any out of her middle ear which is what is causing the most problems for Laura—pain and difficulty hearing. In fact, we did a hearing test that day which revealed her hearing is moderately to severely impaired. The good news, though, is she audiologist was able to confirm it is because of the fluid in the middle ear and not her actual hearing. Matthew’s ears weren’t too bad. He still has some fluid in one ear which we will recheck in 5 weeks. They will do a hearing test then, too. Hopefully the fluid will be gone by then or they may consider tubes. Anthony’s ears were fine. The concern is in the sinuses. The ENT doc said it looks like it could be a chronic sinusitis from allergies or a fungal infection (not related to transplant…healthy people can get fungal sinus infections). We will rescan his sinuses when he finishes his course of Levaquin and go from there. Best case scenario is it is all gone by the next scan. Other end is he would need sinus surgery to clear it.

At home, every one is doing well. I have kept Laura out the past 3 weeks. We’re hoping she is completely better by the end of the Christmas break. At Matthew’s begging, I let him go to school Wednesday and Thursday of this week. In fact, Laura went to school Thursday just for her class Christmas party. The kids were so excited to see her. One boy asked it that meant Laura was coming back for good because he missed her!

Anthony continues to work hard in therapy. He had an assistive technology evaluation done on Thursday. We are very grateful the school arranged it. The woman worked with Anthony on switch activation. She spent a lot of time finding the right switch for Anthony and right position for him to use it in. He did great. He activated the switch every time. At first, his responses were delayed but the more repetitious is got, the quicker he got. Using switches teaches Anthony cause and effect. Eventually, his switch use can become more complex and functional until he is back to talking. The woman doing the evaluation said the goal is 200 switch hits a day. Any body laughing as hard as me? That might be likely if Anthony was an only child! Hopefully, the therapists will help us reach this goal when they are here! Oh...and when the eval was being done, I walked out of the room for 5 minutes for a phone call. When I returned, the 4 ladies present (2 of them his teacher and speech therapist) told me Anthony said "mom". Of course I believe them...I have to, right? It's easy to be a doubting Thomas. I thanked Anthony for my early Christmas present but asked him if maybe I could hear it myself next time.

My mom is improving nicely…so I’m told. I don’t get to see her that much. I’m averaging once a week. I ease my guilt by telling myself my mom would want me home with the kids. Anyway, she has wiggled her fingers on her right hand a couple times. And lately she is lifting her right leg about 2 inches off the bed. She is much more awake and alert. And her speech is improving. She still has difficulty with name and word recall but it has come a long way in just a couple weeks. She still needs a lot of care. Unfortunately, she will be spending Christmas in rehab. BUT, we will be at Lorrie’s house which is close to the hospital so we can all take turns going back and forth. I’m going to bring Matt and Laura to visit…they miss her so much. We will have them wear a mask and gloves just to be safe.

Thank you all for your well wishes for the kids and my mom. It has been a long time since I’ve checked in on the site. I didn’t realize how much I missed it until I read all your wonderful entries. Prayers and love to Carolyn, Mrs. Neuss, and the McInerney family. Thanks to all who sent Anthony some extra special Christmas greetings…the cards are hung in the house for all to see.

More wishes for a beautiful Christmas and a bright Hanukah.

Love
Michele

Wednesday, December 14, 2005 6:49 AM CST

Hi,
Extra time is so hard to come by these days. Anthony and I have been home since 10:00pm on Monday night thanks to Steve and Jeanann coming to pick us up on a minutes notice. Because we went in on Friday,the weekend kept us there longer than necessary. Not much happpens at CHOP on the weekends regarding other departments being open, so we had to wait until monday for Interventional radiology to open on Monday. The plan was for Anthony to go home with a pic line(this is an IV that is more permanent than a peripheral and goes into a large vein. It lasts up to a month). The doctors wanted him to have extended IV antibiotics at home because he was not shaking this ear infection. The belief was it was the same bacteria that caused the one day hospital stay two weeks ago. Anthony had not been treated long enough or with the right antibiotic. We could not get on the schedule for Monday for the pic so it kept us there one more day....we thought..... the pic was scheduled for Tuesday at 8AM, but changed to Wed. at 3pm because of a miscommunication between myself and the doctors. This meant discharge on Tuesday morning and back to CHOP on Wed. for the line. You could only imagine how unhappy both Michele and I were having to bring Anthony back and forth. Well..........literally the last moment on Monday before the doctors were to go home, they received a call from the infectious disease fellow with the recommendation of Levaquin (ORAL MED!!!!!) to treat his infection of the ear and sinuses(which was confirmed on a CAT scan done on Saturday.
Dumbfounded....I said to Dr. Bunin, " what should we do now". She said to go home, you are discharged. We can fill the antibiotic in the pharmacy and it will be ready in an hour. We were so surprisingly pleased. No pic line and we do not have to return on Wed............ Anthony has lost his cough and most of the congestion and is looking quite well. Thank you God for watching over us.
Cabin fever is the theme at the Tomaino house( I have come along way..being able to say the word fever again). Matt is looking and feeling well. We will probably send Matt back to school on Monday. ( Not sure yet). Laura is still coughing and her ears are not much better. She will stay home into the break and we will then evaluate. They both seem to be having a hard time shaking the ear infection. Sound familiar.Thanks to Mrs. Lane and Mrs. Siek for doing the homebounds for the kids. It is so nice to have their own teachers coming to the house.
Nannie Mauro is making some progress in rehab......I will let Michele update you on that because I have not seen her in such a long time.
Just wanted to get you a quick update. We willl get you some more info shortly.

Thanks for keeping the prayers going strong.

Mike

Saturday, December 10, 2005 11:06 PM CST

Brief update...

Mike took Anthony to CHOP early Friday morning because his stomach feeding tube was clogged. We figured he would get in, get it changed and come home but no such luck. They listened to his lungs, ordered a chest Xray and thought he had pneumonia. He also had a whopping ear infection, which we knew about, but they wanted an ear/nose/throat doctor to drain it. Because of the possible pneumonia, they admitted him. Saturday morning, we learned the radiologist confirmed it is NOT pneumonia. So, Anthony is basically in the hospital for an ear infection. They were planning to do a CT scan of his sinuses and abdomen to be sure they checked everything out. We are praying he comes home by Monday after a few days of IV antibiotics to knock this infection out of him. Mike says he looks good and his cough/congestion seems to be better. Huge thanks, Steve, for taking the ride to Philly with Mike and Anthony EARLY Friday morning. Huge thanks, Guy, for bringing Mike and Anthony their things Friday night.

Matthew and Laura seem to be getting better. No more fevers, but I am still worried about their ears. I looked in Laura's tonight and it's not better. I will check Matt's in the morning. This seems to be one resistant ear infection.

My mom has been transferred to rehab. She's got a long road ahead of her. Her words aren't coming out right and she is super frustrated. Please keep the prayers coming for a speedy and complete recovery.

Love
Michele

Sunday, December 4, 2005 11:25 PM CST

A brief entry for a prayer request for my mom...she is having a gastrostomy tube placed some time on Monday. Hopefully she will eat better without the tube in her nose. She is sleepy most of the time and awakes for short periods. She does best anwering yes or no questions. She is having a very difficult time finding/saying the words she wants. It's very hard to see her struggle. She is one strong woman, though. I'm counting on that as well as the Lord's healing hand.

The kids have been dealing with some sort of illness. I'm leaning toward the viral side but one never knows. Matt and Laura both had fevers Sunday. They aren't complaining about anything. They both have these nasty coughs that sound croupy in the evening time. I'm keeping them home from school tomorrow and will most likely take them to the doctors for a once over. Anthony has been a little sleepy...usually when my kids sleep it means they are coming down with something. I'm praying that's not the case for Anthony. I just don't want to see them battling sickness all winter long.

Anthony is working hard on head control. We are waiting on a new headrest for him (the one he has makes it impossible for him to sit upright). His head is so much stronger. He needs to strengthen the muscles that flex the neck. He did a great job Friday and this weekend bringing his head forward. The first time is pretty quick. By the second time, he's a bit tired but he does it. Mike had him laying on his belly leaning on his forearms. Mike lifted his head and gently let go and Anthony held it up on his own...for a very short time but seconds move mountains around here.

Mike and I are thanking the Lord everyday for where we are and how far we have come. Setbacks are disappointing but we have learned to push through them with faith and the rewards will come. Same thing goes for my mom. I don't want to sit back anymore lamenting on this tragedy. I have to renew my spirit and remind myself that if I don't visualize it happening, it won't. I will have the faith to command the mountain to throw itself into the sea. That's what God expects of me. That's what I expect. The battle is long and hard and sad and exhausting, but I will be strong against the enemy and find comfort and rest in the Lord.

Sorry for the "heavy" entry. I'm trying hard to stay strong. I know the words to say but my heart is heavy with anguish for Anthony and my mom. I just want...I just need things to get better.

Thanks for the love and support!

Love
Michele

Wednesday, November 30, 2005 9:59 AM CST

This has been such a trying week. Cannot remember being this tired with little or no reserve to kick in when needed. First.......the kids are fine. Anthony did have a fever last Thursday night and we had to go to Phillly on Friday. They did a blood culture( there was alot of confusion as to if he needed one because he is so far out of transplant). Because it is safe to go on the side of caution, one was done. It grew out a strep bacteria consistent with an ear infection. usually he filters out of the blood on its own. The call came in at 3AM friday night and it was off to the hospital by 4AM. We were in the ER until 2pm on Sat afternoon and then admitted overnight until the Sat morning culture was negative for 24 hours,which it was.Home on sunday by 3pm and back to Philly yesterday for our regular monthly visit with all the kids.WHEW. Matt did great, Laura did well, she just has a little fluid in one of her ears. The antibiotic she is on will clear that up. No fevers and she looks alot better. Anthony looks fine and is CMV NEGATIVE. No guarantees, but with out meds, his body rid itself of the virus. This says alot about his immune functions and the end to those three nasty letters.
All three of the kids had their protocol changed. If they get a fever, we can now call the pediatrician and not go to CHOP or have blood cultures drawn. The exception would be if we sensed something was really wrong. This belief is that all three kids have strong immune functions and can handler whatever their body has to deal with now. We still need to be cautious over the winter to avoid the flu and other winter illnessses. But to be at this stage is so refreshing. Matt and Laura continue to attend school regularly despite the viral season upon us. Anthony is getting therapy about four days a week and continues to work hard. We wait anxiously for more milestones.
Michele's mom is still in the hospital. We continue to wait for the swelling to lessen to see where she is and what the next step will be. With all the stress and pressure we have been under, this has been such a blow to our family. The kids miss thier Nannie and Michele has been knocked completely off her feet. It is so hard to deal with the illness of a loved one, but in our house,it brings more fatique, less help and the difficulty to try to be at your best to handle Anthony and his needs and exercises. I know how hard it is for me, I just can't imagine how Michele is dealing day to day. She closes off to people during these times,so it is so very difficult to reach out to her. At this time, any extra help is appreciated.
Please continue to pray for Fran's and Anthony's recovery and a healthy winter.

Thank you.

Mike

Monday, November 28, 2005 8:37 AM CST

The week has been very crazy and emotional. It has taken a lot for me to sit here and fill you in. While I had no problem updating you constantly about the children's progress through transplant, talking about my mom is very difficult. Writing about the kids, even in the most critical times, has been a matter of course. We knew the dificulties they could encounter and rolled with them. We use this venue to keep everyone informed so we don't have to keep repeating ourselves, but also use it as our own personal recollection of events. What has happened to my mom has blindsided all of us. To sit and write about it doesn't seem natural for me. What I can say is she has experienced a very serious bleed in her brain leaving her with stroke symptoms. She is different everyday...sleeping most of the time, awake some of the time, more alert one day than the next. Her right side and speech has been affected. We don't know what each day will bring. She needs your prayers desperately for a complete recovery. She wouldn't want it any other way.

As if this hasn't been enough, Anthony developed a fever Friday morning. We went to clinic for blood cultures and IV antibiotics and came home. At 3:30 Saturday morning, we received a call that his blood culture grew a bacteria. We got to CHOP's emergency room by 6AM. Anthony was admitted to the transplant unit, but fortunately didn't need to stay long. The ER drew another blood culture and that didn't grow anything by Sunday morning, so Anthony and Mike were home by 3PM. Anthony is doing well. He wasn't sick...just a glitch with the blood work. His body did very well handling whatever infection it had.

Laura also started with a fever Saturday night. I'm pretty sure it's her ears. Matthew went back on an antibiotic on Friday for his ears. Do you think we're dealing with enough, Lord?

Thank you for all your love, prayers and support. To all my friends and extended family, please understand my silence is my way of dealing with things. Believe it or not, I have a very difficult time sharing my feelings, especially with the blow my family has had. Quite honestly, I don't know what I'm feeling. I almost feel numb. I just know I desperately miss Anthony and my mom. Shouldn't one's prayer list get shorter, not longer?

Love
Michele

Wednesday, November 23, 2005 11:54 AM CST

Hi,

Update - Anthony has continued to improve quite well. his congestion is less and it is very loose. We have been aggressive with chest P. T.(banging on his chesat to loosen everything up)and giving nebulizer treatments to do the same. He looks alot better as we speak. We feel so blessed that are fears of it being more serious did not happen.

Matt and Laura both look well and have not missed any school due to their ears infections. Dr. Bunin(bone marrow) believes they all have viruses, along with many others out there during this time of year.

PRAYER REQUEST - Michele's mom (Fran Mauro) had to be rushed to the hospital last night and had an anuerism (bleed on the brain). She is in ICU at community medical center in Toms River. Please keep Fran in your prayer requests......Our love to you Nannie.. from Anthony, Matt, Laura and Mike. Hope to see you soon.

May all of you have a safe and blessed Thanksgiving.

God Bless you and your loved ones.

Mike

Monday, November 21, 2005 10:31 PM CST

Just wanted to give you a quick update that we took Anthony to Philly on Monday. He's been having lots of chest congestion and his lungs sounded pretty junky. Also, his oxygen percentage was dropping at night when he would fall into a deep sleep. Everything is fine and we are all home. His chest xray was clear so his congestion hasn't gone into his lungs. We have oxygen at home, and he is getting very little and doing well. We are also giving him nebulizer treatments around the clock and being aggressive in helping to loosen up the junk. He doesn't have a fever and is in no distress. He is just beat from not sleeping too well. Mike and me, too!

Matthew and Laura are doing good. They all finished their antibiotic for their ear infections but they aren't totally cleared up. It's probably a viral thing they all have to wait out.

I will do a better entry soon when I get rejuvenated.

Love
Michele

Tuesday, November 15, 2005 8:55 PM CST

There has been some mention in the guestbook about Anthony doing some stuff. I don’t want to leave any of you out on his latest feat.

The short of the story is Anthony rolled off the couch on Monday. The long of the story, and you know how I love to give details, goes like this. I got Anthony dressed and brought him downstairs. I laid him on the couch on his back and his head rested on a little pillow. I went back upstairs to give Laura a bath, got her dressed, and sent her downstairs. Now the word informer must mean little sister because Laura is very good at it. If anything was amiss with Anthony when she got down there, she would certainly have let me know. So, no news is good news, I figured I had time to get myself dressed. Seriously, the neighbors are sick of seeing me in my pajamas past noon. When I got downstairs I found Anthony on the floor, arms at his side, perfectly comfortable. After I got over the guilt of him falling on my watch (I guess, technically, I wasn’t watching) and was sure he wasn’t hurt, I tried to figure out how he got to where he was. He couldn’t have slid or fell off and landed where and how he was. I know this because all 3 of my kids fell off my bed as babies and now I am an expert. After I got over some more guilt, I was elated when I realized he rolled off the couch! I called Mike right away and set up the scenario. “I feel REALLY, REALLY, REALLY bad about what I’m about to tell you but there is something really good in it.”

We are so proud of Anthony. Any progress he makes, little or big, is so significant. This one is certainly the topper on the cake for now. We are anxiously awaiting more forward progress for him.

That’s all for now. I am so happy I can update this soon with good news. Thank you, God, for Your hand in Anthony’s recovery.

Love
Michele

Saturday, November 12, 2005 9:52 PM CST

This week has been difficult, for the obvious and not-so-obvious reasons. Maddie's passing has certainly left a sadness in this house. Mike and I wonder daily why she was taken from this earth. We are not struggling with our faith but have so many questions. We hold tight to the thought of her pain-free and healthy in the Lord's arms.

The colds have turned into another round of ear infections. Well, let me back up. On Monday, Anthony started eye drops for pink eye. Don't ask where he got it from...no one he has been around had it. The only thought is he was so congested, it settled in his eyes. Then, Wednesday night, Anthony's heart rate was higher than usual which is usually our sign the he is getting sick. By Thursday night he wasn't getting any better. I looked in his ears and saw they were infected. Off to Dr. Nito's on Friday. Friday night, Matthew woke up crying for what we initially thought was a bad dream. He then started screaming his right ear hurt. I pulled out the otoscope again and sure enough, a whopper of an ear infection just on the right side. Matt didn't sleep well most of the night despite Tylenol and analgesic ear drops. Back to Dr. Nito's Saturday morning. And, what the heck, I took Laura along to be sure she wasn't brewing something that would show up Sunday. Matt's ear infection was confirmed. Laura's turn...DOUBLE ear infection. I almost fell off my seat. She never let on that anything was bothering her. But, it was as if Dr. Nito gave her permission by saying the words "ear infection" to kick into sick mode. By the time we got home, Laura was crying about her ear and had that sick whine working. The only thing good about it is that her whining got Matthew to stop, which was great because his whine was grating on my nerves. The kids are always very concerned for each other when the other isn't feeling well or is crying. So, Laura's crying distracted Matt from his own pain. Augmentin all around! On top of all the whining, Anthony has been struggling to clear his throat since 9:30 Saturday morning. Imagine the worst tickle in your throat and magnify it about 2 million times. That’s what it’s like watching Anthony have to deal with that all day. It’s painful. The worst feeling for me is helplessness. I hate not being able to fix things.

On another much more inspiring note, I have to relay some thank yous to people who have done so much for the kids. First, to Lee Straube, owner, and his students at Jackson Academy of Tae Kwon Do for organizing and participating in a board breaking fundraiser for Anthony, Matthew and Laura. One of Anthony’s friends is a student there. Thank you to all who so generously participated. Check out pictures of the event at www.jacksontaikwondo.cmasdirect.com

On Sunday, November 13, the Moms Club of Jackson is sponsoring a Buffet Breakfast at the Central Jersey Italian American Club in Jackson from 9-12. They are generously donating their share of the profits to the children’s fund.

One of the most ironic things that happened last week occurred during the New York Marathon. Jane Trimper beautifully compared Maddie to the runners that day. Maddie’s strength is what impressed people most. In that marathon, Mary Friedman was running for MLD. We have never had the pleasure to meet Mary, but her spirit is heart-warming. Mary chose to run the marathon with the kids in mind. This is an excerpt of a message she send to her friends and colleagues:
“It is my goal to raise awareness "one step at a time" about MLD and I’m using the marathon to do that. As I run through the boroughs of the "Big Apple" on November 6th, I will be taking the Tomaino Family with me, in my heart and on the back of my shirt...”
In an email to me following the marathon, Mary wrote, “Thank you for giving me one of the most rewarding experiences in my life.” Not even close! All the thanks goes to you, Mary, and Lee, the Moms Club of Jackson, and all the rest who are helping to be sure people know about MLD. MLD doesn’t stop after transplant. It is an ever-present shadow in our life. We are fighting so hard to help Anthony recover but our eye is on the prize of finding a cure. While we can’t focus on that right now, we are grateful to those of you who can. We can’t thank you enough.

I wish I could put sound on this site and share with you something I caught on tape. I will try to give you a visual. We have an outdoor statue of the Blessed Mother with her hands in prayer in our dining room (don’t ask why it’s there, it’s a long story...I’m just trying to give you a visual that it is a rather large statue of Mary!). As she does so often, Laura was singing an original to her. To paraphrase...”you can pray for Maddie, you can pray for Maddie Trimper, you can pray for Emma [Emma McGregor], you can pray for Maddie Trimper, not the Maddie next door....” (and then I was caught). Laura and Matthew pray for several children. Some they met while at the hospital, another is their friend Brittany and others are MLD children we have come to know about. Mike and I haven’t told them about Maddie. We don’t plan to. I want them to continue her in their prayers. What they don’t know is they are no longer praying FOR her but TO her and that’s a thought that soothes me.

Whew! That's one week down. Friday night, I got to go out with my mom and my sisters to celebrate Janice's 50th birthday. I can't remember the last time I laughed so hard. Laughter really is good medicine.

Love
Michele

Sunday, November 6, 2005 7:31 AM CST

I have great news about Anthony's CMV level...this is the virus that he has been battling since September 30th last year. His level from the past clinic visit was 117! Anthony hasn't been on any medication for this for some time now. His numbers have been bouncing around 1600 to 2000 the past 2 months. Dr. Bunin has told us all along that the only way for Anthony to get rid of CMV is with t-cells. Well, we knew Anthony had t-cells but most of them were immature. This tells me that his immune system is getting stronger and his t-cells are maturing. T-cells can only work if they are mature. The other part of this great news is that they consider any number under 500 to be a negative result. Dare I say we are rid of CMV?!? Yet again, we see how strong Anthony is and what a fighter he has become. Thank you, Jesus!

Anthony, Matthew and Laura are battling colds again. They are handling them well, though. Flu season is approaching and we will be back in lock down mode. Even though they have had the flu vaccine, we can't be too careful. If anyone who is around the kids has the chance to get the flu shot, please do. That certainly will help.

Thanks, Janice, for posting the Halloween pictures. And I gave Mike too much of the credit for baking the cupcakes; apparently, he just got out the ingredients. My mom did the hard part! Thanks, Mom!

Please send lots of prayers to Maddie Trimper. She is still in the ICU at Cornell. Today is not off to a good start for her. caringbridge.org/mi/trimpermld

Love
Michele

Sunday, November 6, 2005 7:31 AM CST

Tuesday, November 1, 2005 8:52 PM CST

Thanks all for checking. Today was clinic day and how nice is it to go there without any troubles or worries. As usual, the folks in clinic treat us great and got us in and out in an hour and a half flat. I think that's a record for us.

All three had blood drawn and the numbers are all good. Even Anthony's white cell count has improved. Three weeks ago, while he was on the antibiotic for the sinus infection (or was it ear infection? I'm losing track), his white count was in the twenties. Today, off antibiotics, he was 25! It's still not in the normal range but a far cry from the 30's he's been sporting for so long. Anthony's lungs were clear, much to the doctor's surprise. But like I've been saying all along, treat the sinus infection and he will clear up. Thank you, Lord, for showing them the way!

Anthony got his second series of immunizations...4 again! When I wheeled him into the treatment room, I told him he needed to get his shots and he started to cry. We've been asking him to show us expression and that certainly qualifies. I couldn't blame him for crying. It was bad enough he had to get 4 more shots but he also had just had his blood drawn. I started explaining to Matt and Laura why Anthony was getting those shots again and that they would need to get them later. Then, Matthew looked me dead in the eye and said, "I'm not getting it." Of course I thought he was in denial and was asserting that getting the shots wasn't going to happen, but I soon got out of him that he, literally, wasn't getting it. He didn't get what I was saying. It was funny at the time. Anyway, Anthony has one more series of 4 shots in two more months and then a break until he is 2 years post transplant. For those of you wondering and "not getting it" like Matt, transplant wipes out their entire immune system, including the immunity they got from the baby shots. So, they have to repeat the series. Bear with me if I explained this already.

On the weight issue, everyone held their own. No weight gains for anyone, just minor miniscule weight loss for them all. If you want numbers, Anthony is 56lb, Matt is 47lb and Laura is 32lb.

Today marked 14 months post-transplant for Anthony. I don't look at it as an anniversary but a celebration of getting where we are. Naturally, we wish things were further along and not so difficult for Anthony, but considering the roads he has traveled, we have good reason to praise God.

We are hoping Anthony resumes occupational therapy this week (her name is Janelle). OT from the school won't begin until next week. That's when Anthony will really get pounded. It's time. He's ready. And if not, he will just have to say so. That should be motivation, no?

Halloween was fun for Matthew and Laura. They trick-or-treatng on Sunday with a big group of their friends. Saturday was the party. They were looking forward to it for some time. Anytime they are with their cousins, it's a party regardless. Add getting dressed up and it's just a bonus. They were excited we remain champions in the family theme category (either people are afraid of us or they don't try very hard!) It was nice to see them running around in someone else's house (they haven't been to Janice's house in over a year). Of course, we are sad for Anthony that he can't partake in it yet. To just know his thoughts. I know I say this so much, but imagine not knowing what your child, who was once able to tell you everything, is now thinking or feeling. It's such a helpless feeling. I don't wish that on anyone. Each day is an emotional struggle for Mike and me. I'm not sure how much of that people get. Someone likened our situation to having a baby again. Yeah, a 56-pounder who not only needs his basic needs met but needs constant stimulation and exercise to move 1/8th of an inch forward every once in a while. It's draining in many ways, but I am grateful the Lord has seen us all through thus far.

Our struggles these days fade in comparison to what Maddie Trimper is facing. Talk about a fighter! Please, please continue your prayers for her. God is certainly listening.

Check out the new pictures!

Love
Michele

By the way, if you're wondering why Matthew is dressed like a vampire, you must know we weren't just the Scooby-Doo gang but a Scooby movie---Scooby Doo and the Legend of the Vampire! Clever, right?! It was Matt's idea!

Did Matt's comstume with Laura stump anyone?

Friday, October 28, 2005 7:19 AM CDT

Prayer is a daunting thing. We say prayers for many different reasons. And we never know when they will be answered. But we persist and await a response. Sometimes the answers are obvious and sometimes they are hidden in other messages. But they are eventually answered in some way, aren't they? We have asked for many things along this journey, some HUGE, some trivial. And the Lord has treated every one with great attention. Despite many hard setbacks, we feel so blessed with where we are and anxiously await where He is leading us. The road to healing is long, hard and painful. But the rewards await, I know it.

One has recently come. Like I said, prayers are answered in indirect ways. While my daily prayer is that Anthony fully recover, I know the way there will take time and intervention. It's the intervention part that is so important. And one that Mike has specifically asked your prayers be directed -- that God send the right people Anthony's way who can lead him on that road to recovery. We met her yesterday. The occupational therapist who will work with Anthony 2 days a week. It's not anything she said or did in particular but the sense of "we can do this" she exudes. She was never negative in her words and only talked about things in terms of leading to the next step for Anthony. She is bringing a whole new wealth of knowledge to the table. She is dedicated, caring and from Children's Specialized Hospital...need I say more? Of course I need to say more because there is irony of her being Anthony's therapist. Her brother is Matthew's music teacher. And she has worked with the school district's occupational therapist that will hopefully start with Anthony next week. Things are falling into place. God has set us up for the next phase for Anthony. He has answered our prayers and continuously reminds us He is watching and listening.

Anthony, Matthew and Laura are doing great. Matthew has his Halloween party today. I know, sounds weird. But we live in a town that trick-or-treats the day BEFORE Halloween--so don't get me started! I made bat cupcakes for his class (sooo much easier than the frankenstein ones, Lisa...I give you lots of credit for doing those!). I love doing those things. I'm glad that things are going well that I have time to do those things again. That is my normal--staying up late to ice cupcakes and stick on m&m's, mints and whatever else it takes to make something special for my kids. Of course, things aren't that normal...I didn't have time to make the cupcakes myself so Mike made them for me. Scary thought, I know, but he did a great job. But I did have to remind him to READ the directions and not just LOOK at the pictures. I'm just teasing you, dear...you are awesome!

We are looking forward to Janice and Ron's Halloween party tomorrow night. The kids have been counting down for a week. It's different leaving the house these days...lots more to pack and think about. But doing something like this is the kids' normal and they certainly deserve it.

Thank you all for your continued support and prayers. Know that they are being answered. If you haven't posted in a while, we would love to hear from you. If you're an outsider looking in who doesn't post, speak up. We want you all to take credit for the wonders the Lord is working because of your thoughts and prayers.

Love
Michele

Sunday, October 23, 2005 7:44 PM CDT

Rain really puts a damper on things. Like everyone else, we were stuck in the house. I did get my weekly trip to Target, though. Mike's dad was over, so we had company. It's always good for the kids to see other faces than ours. Fortunately, the kids were able to enjoy today outside.

You would think weekends are better for us being that Mike and I are both home but that's not the case. It is sometimes more challenging. We both know what needs to get done but aren't always good at communicating them to each other. We are Anthony's physical, occupational and speech therapists on the weekends. There are lots of things to do and we aren't in a routine yet to get all his needs accomplished in an orderly fashion. Plus, we are usually interrupted by Matt or Laura with their own things. It's a crazy house. Mike just got over his ear infection and I started with another cold so we make for two out of shape people. This is not a house where you can be sick. Any time we take away for ourselves leaves more work for the other. And that just leads to fatiuge and frustration. And when we get frustrated, we get upset about Anthony's condition. And then it's just a downward spiral from there. I pray so hard every day that Anthony will show more progress, that he will do something special. And on the frustrating days where Anthony is unchanged, I cry the most...longing for the days of just a little more than a year ago when we were a complete family. I think back to the things we worried about and have to laugh. How trivial. How I long for the day when Anthony would shut off the light of the room I just walked into. I know in my heart through my faith in God's promises that I will enjoy that day again. The frustration and fatigue just make it harder to see. Jane Trimper posted something on her page about the irony of fighting for a long life for your children while they suffer in the process. How I soooo understand and appreciate that. There's just nothing to say to that except that we have to keep believing that our children will reap the reward of our prayers and trust in the Lord.

I keep looking at this page in a daily thought calendar that is on my desk. It says...

Some of life's greatest virtues -- such as faith, patience, perseverance, and hope -- come by way of disappointments. (John Maxwell)

and...

Suffering produces perseverance; perseverance character; and character, hope. (Romans 5:3-4)

Every time I read it, I have to sit back, think about it, and let it sink in. I think the distraction of thinking about it helps ease the frustration. Until the next day. And I'm always praying for a better tomorrow.

Many prayers for Maddie Trimper (Laura made a picture for her today; it's just precious), Lorrie's friend Meril, Joe Pellegrino's dad who is having open heart surgery on Wednesday and Tommy Carretta who is recovering from viral meningitis.

And please join me in congratulating my college roommate, Sandi and her husband Ethan on the birth of their first child, Jacob born October 12th, weighing in at a whopping 11 pounds!

Love
Michele

Thursday, October 20, 2005 6:01 AM CDT

Hi all,

Thought I would help Michele out abit with a quick update....first, it is so great to see you home carolyn. you have been such an inspiration of faith to michele and I. The kids are doing quite well. Matt and Laura are back into the swing of school. It is such a good feeling to see Matt jump out of Domini's van each day after a long school day. He used to putter out in the beginning of the year. He really has regained the endurance he always had before transplant. Laura just can't wait to run in the house and show mommy what she did in school each day. She loves getting homework (don't puke Matt!). Anthony is doing well. He is 90% over his cold and looking good. PT continues to progress. We are bringing on OT"S very shortly. The problem has been Toms river school can't seem to find one to do 2 hours a week of home instruction. Anthony is so ready to continue in the next phase of his recovery and this (OT) is such an integral part of it. Prayers for the right therapists to enter anthony's life. I have full faith it will happen as our prayers have always been answered when help is needed. The lord has been good to our family and our children are blessed to be protected from the dangers of this world.

Have to get to work. Yes, like Matt, i have adjusted back to the early mornings get ups.

Mike

Saturday, October 15, 2005 10:21 PM CDT

Wow! It has taken me a couple days to get onto this website! Thank you, Trish, for spreading the word about Carolyn. You can count on our crew to help tow her load.

Considering the weather, I didn't send Matt and Laura to school on Friday. They slept in a little that morning, anyway. What was I saying about the ear infections? Add one more to the list...Mike. He was trying to fight something off all week but it got the best of him. Here he was staying home trying to help me and he got sick. We try so hard to keep the kids away from as many germs as we can control that we're probably weakening our own immune systems. So, needless to say, it's been a tough week. Housebound from the rain and illness. It's hard enough to get out of the house on their well days!

Anthony continues to do well. He's got a bit of a drip going on, though. Not a sinus thing...I think just a cold type of drainage. It disturbs his sleep sometimes. He must have been awake a lot last night because he was pretty washed out today. Anthony started speech this week. He's been so much more awake and alert lately. It's hard to say that and convince myself of it because I see him day in/day out. But when people who don't see him regularly say it, I know I'm right. Pictures don't do him justice. And for those of you not able to visit, you'll just have to take my word for it. For those of you able to visit, see for yourself!

Matthew and Laura spent the entire Saturday outside making up for lost time. Laura's cough is getting much better and Matt barely coughs at all. Probably not a big deal for you guys but considering the last time Laura coughed this way she had a lung biopsy, I pay close attention to it. Laura was so happy that Mrs. Lane came over everday after school to do the work she missed. Matt was excited that she was here for Laura...don't get me wrong, he loves Mrs. Lane but he didn't want to have to work. I got that dirty work. I don't know how you home-schooler moms do/did it. I know Carolyn home-schooled all of her children. More evidence in my eyes that she is an angel.

The night goes into morning ("Mandy" for all you Barry Manilow fans). That's how our life goes now. Mike and I don't get out much...separately that is; together is out of the question! Anthony isn't fragile but needs constant attention. Which leaves one of us for Matt and Laura. They play outside when they can but of course we need to keep our eyes on them, too. When they are inside, it's gets difficult. Laura constantly tries to lay guilt on me saying "you're always with Anthony" or "you always play games with Matt." Quite honestly, she takes up more of my time than the boys. Someone gets slighted all the time. And it wasn't like this before. Yes, we were outnumbered, but we were able to manage time with each of them better before all this. Laura would be reading by now. Matt would be riding without training wheels. I don't know where Anthony could be at. They all have certainly drawn the short straw. They HAVE come a long way, praise the Lord, but, oh, if they didn't have to travel this road. But there's no time for sorrow. Time to go make formula.

Love
Michele

P.S. A belated but HUGE thanks to Gary for getting the van serviced for us. You and your friend helped us out ENORMOUSLY. We can't thank you enough. And thank you, Tara, for doing the pick-up and drop-off!

Wednesday, October 12, 2005 9:26 PM CDT

What a wash out! Keeping the kids home from school this week was perfect timing. They would have been floating there and back!

Anthony had a good clinic day Tuesday. Mike took him with the help of "Jersey Joe". His labs, weight and exam were all good. So good, in fact, that Dr. Bunin thinks we can go on a monthly schedule! We will go back in 2 weeks, though, because that's when Matt and Laura are due and then they will all be on the same schedule. We're still awaiting the CMV number which usually comes back on Friday. Anthony saw the GI doctor, too. He took Anthony off one of the stomach medicines he is on. Now he's down to just 3 meds, one of which he gets just 2 days a week!

People have been asking us about why Anthony isn't eating and when he will be able to. Everything about Anthony is weak and not working properly. He's just not ready to have anything in his mouth that would put him at risk of choking. As he gets stronger, we will pursue a feeding evaluation with a speech therapist. But this isn't for a while yet. One other reason he isn't ready is because his stomach isn't ready. Right now, the formula he gets through his tube goes past his stomach and into his small intestine. Anthony's stomach is still recovering from GVHD (graft versus host disease). He couldn't move formula out of his stomach. BUT, the gastro doctor wants to try again soon. When this ear infection and congestion resolve, he wants us to try giving him about 2 ounces of water into his stomach 3 times a day and see how he does. We will be sure to let you know when this will start so you can shift the prayers into high gear for him.

Anthony is finally starting to get services from the school. He gets one hour a week of PT (in addition to what we get through insurance), 2 hours of OT and 2 hours of speech. We just met the speech therapist today and we are waiting for the OT to start. My hope is by bombarding Anthony with lots of services we will awaken his brain and body to get moving. This couldn't be a better time to do it. Anthony has been looking more alert and responsive than ever. Good things are coming. They have to. I believe it.

Matthew had a loose cough yesterday but not much today. Laura still has a little cough but it is better today than it was yesterday. Mike has been home this week. He knew I wouldn't be able to do it alone with the 3 kids home. All this rain isn't helping! Mike thought for sure I would send Matt back to school by Wednesday. Not unrealistic considering nothing slows this boy down...he IS the energizer bunny. I keep looking for the battery door on him but no luck yet. We have decided to send them back on Friday. I think for Matthew's sake it is better for him to transition back to school on a Friday than a full-swing Monday.

Thank you to Mrs. Lane and Mrs. Friedman for coming over after school to work with Matthew and Laura on the work they missed. Hopefully, Mrs. Friedman has recovered from her time with Matthew (lovable kid but a master manipulator who likes to guess the answers). Thanks, Joe, for driving my guys out to Philly. And, thank you to all who cooked us meals this week.

Love
Michele

Monday, October 10, 2005 8:36 PM CDT

Make that a total of 4 ear infections. I brought Laura to the pediatrician today because she had a low grade fever and I didn't like the looks of her left ear. BOTH ears are infected! You gotta love it. I don't remember Laura ever having an ear infection either. This is nuts. So, we've got 4 infected ears, 3 antibiotics, 2 kids home from school
and a house full of germs we can't shake! Sung, of course, to the tune of Anthony's favorite song, "The Twelve Days of Christmas." If I had more time, I would have completed the whole song!

Clinic tomorrow for Anthony. He has an appointment with the gastrointestinal doc, too. Nothing to really talk about at that visit. We'll fill you in tomorrow.

Love
Michele

Sunday, October 9, 2005 8:33 PM CDT

Don't let the silence fool you. It doesn't always mean things are well. Not that things are bad...just off. For the past 4 days, Anthony has gone back to struggling with chest congestion. Fortunately, it's nothing like a sinus infection, no nasal drainage. Just junk in his upper chest. Then, Saturday morning, Matthew woke up with a barky cough. A trip to the pediatrician didn't reveal alot...probably just a cold. But the usual famous words, "if it gets worse, give us a call." Sure enough, Saturday night, his nose starts pouring out green stuff. Then, Anthony was awake ALL NIGHT trying to clear his throat or disturbed with a powerful cough. At the same time, Laura woke up crying several times complaining that her ear was hurting; I looked at it, but no sign of infection. Then, she woke up Sunday morning with a headache. Matthew woke Sunday complaining of his ear hurting. I checked it out--ear infection! Called the pediatrician who called in an antibiotic. THEN, Anthony felt warm. Fever 101. Plus, he was breathing pretty fast. AND I looked in his right ear--ear infection!! After a call to the oncology clinic and a trip to Jersey Shore's ER, Anthony got an IV antibiotic, extra fluids and sent home on an antibiotic. His fever went away and his breathing is much better. THEN, when we got home, Laura felt warm. Not much of a fever, just 99.6 but I'll be calling the pediatrician in the morning. So, two ear infections and probably one in the works. While this sucks, we are totally grateful that it is just ear infections we are worrying about.

Considering the likelihood that all this came from school, we aren't going to send Matt and Laura back until they are 100%. The germs are already in the house and sending them to school already trying to fight something just leaves them open to too much more. It's a good week to do it. They are off Monday and Thursday. I'm sure many of you are wondering if it's worth it sending them to school this soon after transplant. Well, according to our doctors, kids go back to school as early as 6 months after transplant. Plus, their immune system IS rebuilding and they are able to fight off some things. Face it...5 months ago, an ear infection could have landed them in the ICU. And, most importantly, it's good for them. As much as Matthew is struggling to get into the school routine, he needs to be there. Laura not only needs to be there, but thrives being there. Please don't judge our decision to send them to school. Just keep praying that we never have to worry about anything worse than an ear infection or cold.

Everyone is sleeping. I'm praying for a quiet night for us all. We all need the rest. Mike and I can't afford to be sick with them. Thank you, Lorrie, for watching Matt and Laura.

Prayers for 3 month of Alyssa (a friend of the Ackerman's) who is hospitalized for failure to thrive. Poor baby won't eat and the doctors are struggling to find out why. Prayers still for Maddie and Meril.

Love
Michele

Sunday, October 2, 2005 8:16 PM CDT

Bear with me with the picture section...I have successfully posted one of Laura without her tube (and with a special hair-do!) but I'm having a hard time getting the one of Anthony on his tilt table to size right. I'm determined, but now I'm too tired!

Anthony's CMV level from last week's clinic visit was 1,600...down from 1,800! I forgot to mention the other great news...now that the port is out, Anthony goes to clinic every other week!

Thanks to the beautiful weekend weather, Anthony, Matt, Laura and I took a road trip to Allaire State park's craft show with Janice and Lisa. It was a bumpy ride for Anthony (the walkways are mostly gravel) but the sound of the train brought a sparkle to his eye -- literally! Janice saw his expression in his eyes change when the train whistle sounded--two separate times. For those of you who don't know, Anthony loves trains and was as frequent rider of the historic train in Allaire.

Matthew and Laura started karate classes this weekend with their friend Ryan. They really enjoyed it. It should help re-condition their bodies. Transplant has taken some of their strength away but they are rebuilding. Laura is taking dance again, too. She misses seeing Kelly every week but is happy to be with her friend Brittany. She is also very excited that she gets to do 2 dances for the recital.

My friend Michele talked about a "new normal" in her home. I absolutely understand and appreciate the term. While we are not living the normal life that we knew, we are adapting to our "new normal". There won't be normalcy for a long time but having 3 healthy children is a blessing we remind ourselves of everyday. Maybe normal isn't what it's cracked up to be.

Thanks for the prayers for Lori...she is home! Keep them coming for Maddie and Meril and all of our loved ones.

Love
Michele

Tuesday, September 27, 2005 8:27 PM CDT

Did you hear it? Did you feel the ground shaking? It was the revised "no-more-port-no-more-tubie" dance!!! It was a great clinic day!! Here's the low-down...

Anthony...
One year later and Anthony is FINALLY port-free! This means less risk of scary infections. He was sedated for the procedure so he has been sleeping most of the afternoon. He looks great and is resting sooo comfortably--Mike and I feel guilty to move him off the couch to bed. Anthony's clinic exam was good. He's been battling the cold which seems to have settled in his chest and wouldn't you know the doctor said his lungs sound good despite it! Way to go, Anthony! He is an amazing boy. Amazing things are coming his way. I can just feel it.

Matthew...
What can I say about Matt? He looks great, he feels great. He is great! The most rigorous part of Matt's exam today was being tickled by Dr. Aplenc, AKA Dr. "Antsinthepants" (that's ants in the pants, Sue...I know you're trying to figure it out!!).

Laura...
What a brave soul she is! She proudly announced to everyone that her nose tube was coming out. She only wanted my sister Lorrie to be with her when Carrie the nurse took it out; she wanted to surprise Matt and me. Everyone made such a big fuss over it. Mike was with Anthony getting his port out at the time and she didn't want us to call him. She wanted him to see it for herself. What a beautiful face the tape was covering up! It's so good to have the tape off her cheek. She has some irritation from it but it's getting better each time I look at it. She also has tan lines around it! She either needs some sun exposure or cover-up before her school pictures next week! By the way, her weight was exactly the same as two weeks ago which I am very happy about. I have no doubt she will do well without that tube.

The worst part about today for the kids was they got their flu shots. It was a surprise to all. Laura volunteered Matt to go first, and being the brother who does everything for his sister, he obliged. He, of course, cried before the needle even went in. Laura cried just seeing Matt cry. But she amazed me because once I calmed her down, she didn't cry at all when she got her shot. Matthew and Laura held Anthony's hand while he got his. Little did they understand that he had sleepy medicine in him that kept the pain away!

So, I asked you all for dire prayers for Maddie Trimper and she fought the odds thanks to them. People have posted some caring bridge sites that reveal some miraculous events. Maddie is no exception. Friday night the doctors gave the family no hope and 2 days later she's eating jello. Miracles are all around us.

While Maddie still needs your prayers, I have another request for Crissie Scott's sister, Lori. She is in the ICU at Mount Sinai after a scheduled surgical procedure.

Prayers also for Meril Davies, a friend of Lorrie. She is also in the ICU from complications from a tumor.

Lord, this weekend we have witnessed firsthand Your healing ways as we have witnessed them so many times in my own children over this past year. We come to You asking for continued showers of healing on Maddie, Lori, Meril, Anthony and all of our loved ones who need You. We know that You can heal, Lord, but better yet, we know that You will. We thank You for Your blessings upon our families and look toward days of complete healing.

Thank you, God, for a great clinic day.

Love
Michele

P.S. Thanks, Lorrie, for taking the day off to help us out. We didn't think we would need it but you know better than us! You were, as always, a huge help and you must know how much the kids love you.

P.S.S. Sue, when the words both end in "day", it doesn't count as a rhyme. Go back to your Dr. Seuss studies and get back to us!

Friday, September 23rd

URGENT..URGENT..URGENT..

PLEASE, PLEASE, PLEASE lift up Maddie Trimper in your prayers today. She is very sick and needs our intersessions NOW. You can check in on her at...
caringbridge.org/mi/trimpermld

Thursday, September 22nd
It's been a long hiatus but I'm back. Adding homework into the mix really throws me for a loop right now!!

Anthony's cold is getting better, thank God. A simple cold makes me nervous, especially considering all that he has been through. Anthony went to clinic on Tuesday. His labs look great (white count still high, still don't know, just shake my head every time I see it). His electrolytes are doing well off the TPN. His weight was the same. Anthony is doing really well with the tube feedings...he will be at his goal amount by Tuesday! If he gains weight, we will back off the amount, but what long way we have come!! To give you an idea, when Anthony first came home in June, his feeding was 15 ml/hour. He is now at 80ml/hour!! Anthony's CMV level this week was just a tiny bit higher at 2100. The doctors are still considering this a very low number and have made arrangements for his port to come out on Tuesday!! Mike doesn't even know this yet!! We will be doing one major no-more-port dance that day, let me tell you!! Anthony continues to work hard in PT.. He is working on rolling over now in addition to focusing on improving head control. He can get to his side with a little assistance and is close to going over all the way. Anthony is one fighter. He is always trying, working so hard. You just can't count this kid out. Patience is a difficult thing and one we talk about alot but the little rewards are so worth it. Of course the little rewards make us greedy for more fast but we're human!

Matthew is pushing along. First grade is a HUGE adjustment for him. He is not used to sitting, working and listening for that long of a day. He has made a huge jump from half days last December to one-on-one tutoring in his house for an hour to a 6 hour day which starts out with language and reading for 2 hours straight!!! He is exhausted and emotional but, fortunately, still the fun-loving, affectionate, social Matthew we know and love. He still struggles with not wanting to go and not wanting to do homework. And any atttempt by Mike or me that seems the least bit educational is a turn-off to him. He is literally fried by the end of the day. We'll see how things go. Either he will have an epiphany in school that this learning stuff isn't so bad or we'll get him a tutor. How nice is it to worry about non-transplant stuff!

Laura has some remnants of her cold but it isn't slowing her down. Ironically, I think she has more energy now than ever before. And it's even more ironic because we have reduced how much tube feeding she gets. She is doing better with eating. She did even better eating at Domini's house on Tuesday--the girl can eat when she wants to! We are asking them to take out the nose tube at clinic on Tuesday. Enough already. She was 31 pounds when she went into transplant. She is up to 32 pounds now. Yes, she's little but she has always been little. We can change her enzyme level but we can change her metabolism!

So, next Tuesday, we all go to clinic. I told everyone at clinic this past Tuesday to brace up for it. It's always interesting when the entire Tomaino clan shows up. Matthew is like a bull in a china shop there. Maybe we should bring a leash!

Thanks to Chris Pellegrino for driving me and Anthony on Tuesday.As much as I would like to, I can't make that drive alone with Anthony. You never know if he's going to need something. Plus, it's so nice to have company.
Thanks to everyone who has been cooking. It is so helpful during the week.

If anyone in our area knows of a cleaning person, we are looking for one. We've been blessed with Kathy, Kinga and Peggy for too long. We are eternally grateful!

I want to share this story with you that a friend sent. It's a beautiful reminder for me of God's hand in my life...

Malachi 3:3 says: "He will sit as a refiner and purifier of silver."
This verse puzzled some women in a Bible study and they wondered what this statement meant about the character and nature of God. One of the women offered to find out the process of refining silver and get back to the group at their next Bible Study.
That week, the woman called a silversmith and made an appointment to watch him at work. She didn't mention anything about the reason for her interest beyond her curiosity about the process of refining silver. As she watched the silversmith, he held a piece of silver over the fire and let it heat up. He explained that in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest as to burn away all the impurities.
The woman thought about God holding us in such a hot spot then she thought again about the verse that says: "He sits as a refiner and purifier of silver." She asked the silversmith if it was true that he had to sit there in front of the fire the whole time the silver was being refined. The man answered that yes, he not only had to sit there holding the silver, but he had to keep his eyes on the silver the entire time it was in the fire. If the silver was left a moment too long in the flames, it would be destroyed. The woman was silent for a moment. Then she asked the silversmith, "How do you know when the silver is fully refined?" He smiled at her and answered, "Oh, that's easy - when I see my image in it."
If today you are feeling the heat of the fire, remember that God has His eye on you and will keep watching you until He sees His image in you.

Love
Michele

Saturday, September 17, 2005 9:07 AM CDT

Hi,

Weekend update on the kids.......other than a little runny nose....Matt and Laura are fine and did well going to school yesterday. It was nice it was a Friday so they can recharge over the weekend. Anthony is holding his own also.....Michele picked up an antihistimine to dry him up abit, but it doesn't have the sleppping effect of Benadryl. As blah as he felt, he still worked in P. T. on Thurs. and Friday. If his CMV is down over the next few weeks or negative, the impression from the doctors is the port may be history. They want it out as bad as we do. Pray!!!!
We are trying to get O.T. through the insurance company by forfeiting our nursing care for the rest of the year and using another part of the policy. Prayers for that and for Liz Figeuroa (our insurance case manager who will try and convince the medical director to approve it). O.T. is so important....because the fine motor pathways used to strengthen these areas(neck,trunk,fingers) are the same ones used for speech.If we continue to improve the fine motor skills,the likelihood of speech can follow.
For those of you who have been asking, going back to work has been a mixed feeling. It is hard to give up the control and time I spent with Anthony over the past year(although he is in great hands with his mom).Although,I will be relentless until anthony stands again..not being with him all day takes some of the passion out of it.Another thing, getting up at 5AM is brutal. I have always been a morning person, but in transplant, you don't go to bed most days until 2AM...................On the flip side, going back to work does bring some sense of normalcy. Thank you to my colleagues and students at Jackson Memorial High School for the warm welcome back. Our family is so indebted to the staff and community of the Jackson Township school district for all you have done. Special thanks to the guidance Dept. and my boss (Laura) for all your help,flexibility and work you did for the fundraiser in my absence.
Thanks to Trish Knight for the healing psalms from the new testament. I read them to Anthony everynight while he is falling asleep.I feel our family is so blessed to be where we are at this time. Continued prayers and patience for the day Anthony returns to the young boy that God meant him to be.Believe and it will happen.

God Bless,

Mike

Friday, September 16, 2005

CMV UPDATE.....
Anthony's CMV level DROPPED to 1822!!! Thank you, God! And, while I'm at it, thank you, Lord, for keeping the colds just colds. The kids are vulnerable to much worse, so thank you for keeping them strong.

Thursday's entry...

Typical of going back to school, someone brought home a cold. Anthony and I started yesterday and have it the worst. Figures, right? He just gets over a major sinus infection and now he's back to battling a stuffy nose. Laura started sniffling last night and was pretty stuffy by this morning. Matthew had a runny nose on Monday but nothing since. But, he has been tired this week. I had to wake him up for school yesterday, and as the time ticked away this morning, I decided to let him sleep in. Because he looks so good, it's easy to forget that he is still weak inside. It's a long day for him and a big transition for all of us. Anyway, I kept them both home from school today. I figure I'll be on the roof by noon.

We are still waiting for Anthony's CMV results. CMV stands for cytomegalovirus. It can make someone with a weak immune system pretty weak. Fortunately for Anthony, he was treated before this happened. Anthony first tested positive the day he came home from transplant, Sept. 30th and has been battling it ever since. Please pray hard that this number comes back lower this week. I would hate it for Anthony if he has to get reaccessed for the IV medicine.

In my last entry I forgot to give praise to God for getting Anthony off TPN. We had been striving so long for that day and I promised to sing Him praises when that day came. I've been so busy lately asking Him where He's been that I neglect to see Him in the little things. I forget what glorious things He has given us. Mike and I talked about this the other night. I think it comes down to me losing patience and wanting it all for Anthony right now. When I read Lanes, website, I was elated for him and his family, but jealous, too. Not a good Christian moment for me. But the Lord sent me a wake up call. Mike called me downstairs (the same night we talked about how I've been feeling) to show me Anthony was moving his right hand and fingers. Thank you, Lord, for the peaceful reminder of Your presence.

Love
Michele

Tuesday, September 13, 2005 5:22 PM CDT

I've got time for a quick clinic update for you. Laura and Anthony went today. Thanks to Joe Pellegrino for getting us there and talking me out of leaving Laura there. Boy, was she in rare form today!

Anthony...
The big news is NO MORE TPN!!! Which means his port needle is out!!! His port is still there under his skin. But there is no needle or dressing. It's the first time since last August that Anthony's chest has been free from dressing. This is a big day!! His weight went down by a pound...yay! His CT scan of his sinuses is greatly improved. Now, we are just waiting on his CMV level. Two weeks ago Anthony's level went up to 3,000 after 3 weeks of negatives. Last week it crept up again to 3,900. Please, please, please be lower or negative this week. Once CMV is out of the way for Anthony, his port can come out. This would reduce his risk for infection significantly. I can't tell you how desperate we are for this to happen for Anthony, among other things, of course. Our prayer list is long, I know. This child is worthy, Lord. Please hears our pleas.

Laura...
Up another pound!! I tried very hard to impress our desire for the tube to come out soon. She's up to 32 pounds... a record for her. But, the formula is taking it's toll on her and me during the night. She is up 3 to 4 times a night to pee. And when she gets up to pee, she's got enough energy in her to run a marathon. Okay, maybe not a marathon, but she can certainly hold a major conversation in the middle of the night! The down side to all this, of course, is she's tired during the day. So, we're down to 2 cans a night and hopefully within the next few weeks, the tube will come out.

That's all for now. I've got to run after the kids. Matt and Laura are outside playing...I need to wrangle them in for dinner and a the bath...Anthony's pooped out from the long clinic day...me, too. Should be an interesting night.

Love
Michele

Thursday, September 8, 2005 7:49 PM CDT

Once you have recovered from falling off your chair upon seeing an entry already, check out the new pictures of the kids. I have finally gotten all the right tools needed to download them so I can update more frequently. Marjorie, hang on...my next picture of Anthony will definitely be of him on the tilt table...you must have read my mind!

Airing out my feelings last night helped so much. Anthony's nurse couldn't come today and we had a great day despite it. When I talked about "mommy time", I was talking about Anthony and I rebonding. We got to do that today. It was so great to be here by ourselves for a few hours. I even did laundry and made the beds!! I am more productive than I thought I could be. Thank you, Lord, for sending me the sign that I needed...not just that I want to do this alone but that I can.

My sister, Lisa, asked us to post something about the Make-A-Wish foundation's Walk for Wishes this year on Saturday, October 15th at Liberty State Park. Apparently there was a positive response from past walkers and new ones, too. Last year, "Anthony's MLD-stroyers" raised the most money for this organization that is near to our hearts as Anthony had his wish fulfilled before transplant. Anyone looking for more information can email Lisa at leemarie66@aol.com

Happy Birthday, Blessed Mother. How about celebrating it with a little miracle in Toms River?

Love
Michele

Wednesday, September 7, 2005 9:55 PM CDT

Okay...yes, I have been neglectful in my entries. Yes, the house has been bussling the past couple of days. But, I do miss the cartharsis(?) I get from writing in this journal. It's my sounding board as well as your information highway.

Before talking about school, you should know Mike, Anthony, and I made an unexpected journey out to CHOP on Monday. Anthony's stomach tube had come out one too many times and had to be put back in under radiology (because it is placed past his stomach and into his small intestine). Fortunately, we weren't in there for more than 40 minutes.

Now on to school. Matthew chose to sleep in on his big return to Hooper Avenue Elementary. I had to wake him, but he woke with a smile. Laura, on the other hand, was up before 7, stating she wanted to be the first one dressed. Good thing, because the first outfit is never the last and we only had 4 more hours until kindergarten would start! She goes for a half day in the afternoon. Luckily for me, Lisa showed up and helped solve the fashion crisis...Laura wanted to wear a play dress that is too short with red and black Minnie Mouse shoes. Did I mention the dress was pink and orange? She looked beautiful in the original outfit she had picked out the day before. Pictures will come...I promise. They were both so excited and enthusiastic about the day. Rememeber, they haven't been in school since early December last year. They looked exhausted when they got home! Laura couldn't say enough about her day. Matthew could only say they don't play enough in first grade. We'll see how long his enthusiasm for school lasts! He scared us a little Tuesday night, saying he didn't want to go to school. But he was up on his own Wednesday morning, picked out his own clothes and dressed himself! Two for two so far! Laura loves school and would go all day if she could.

Was the first day of school exciting? Yes. Am I nervous they may catch something? Yes. Was is great to see Matt and Laura going back to their lives as they should know it? Yes. Was it a touch of normalcy? No. It will not be normal until Anthony is going off to school with them. Normal? That word will forever have a new meaning in this house. Like Mike said before, it's hard to enjoy the moving forward part when Anthony is still behind. Matt and Laura's first day back to school brought tears to my eyes, but not for the typical reasons.

Yes, Anthony got his mommy all to himself but we weren't alone. I arranged for a nurse to come in 3 days a week to help out. But you all are making me question if I made the right decision. It's so nice how you talk about "mommy time" and alone time for Anthony. Getting Matt out to school and then Laura, getting Anthony bathed, dressed and ready for PT, getting laundry done, making beds, making formula seemed insurmountable to me. The thought of doing all of this on my own after having Mike home everyday scared the bejeebies out of me. When I look at what I have written, it seems so simple. After all, I did that when Matt and Laura we born. On a smaller scale, of course, but I did that AND more...cooked, cleaned, shopped. But that's not all possible right now. Anthony is NOT the size of a baby, I can't toss him in a car to take him to Shoprite or the mall, and he certainly can't fend for himself. Not to mention that Murphy's law rules in our house a lot...just when you think things are calm and stable, WATCH OUT! But "mommy time", hmmmmm. Am I being selfish? Lazy? Am I not giving myself enough credit that I can do more? I did feel a little out of the loop when the nurse was here. Don't get me wrong, she's great. She's right on top of everything and was one step ahead of me all day. I think I had different expectations, too, though. I thought all the things that take my time away from Anthony would be handled by her...doing his laudry, changing his sheets, making his bed, making his formula. If anything, I did feel like I wasn't with him at all because I was doing these things instead. I don't know. You've got me thinking. I like the thought of "mommy time". That was my intention. I thought I would be better for him if I didn't feel so worn out. That may not be the case. You've got me thinking...

Anyway...(I told you this journal isn't just for you!!)...clinic. Anthony started off with an echocardiogram and EKG for his one year post-transplant follow-up. His labs look good. We won't know his CMV status until Friday. And, the issue of all issues, he gained another pound!!! I knew this would happen because they didn't reduce his calories in the TPN last week. Fortunately, Ginny saw Anthony today and she is a go-get-em lady. The decision was made to cut the TPN in half with the hopes of him being off it next week! We will continue to increase his feedings with the goal being 75 ml/hour for 16 hours a day. Anthony's already at 63! We will add water to the day to make sure he gets his daily fluid requirement. For now, Mike and I are extremely happy. FINALLY we have a goal and an end to TPN in sight. Now, if we could just be rid of this CMV for good, the port will be the next thing to go. Please focus your prayers on this.

In terms of Anthony's physical progress, very minimal gains, but gains, right? He is up to 60 degress on the tilt table. Gosh, he's gotten so tall! He made a great effort to try to roll from his belly to back. He even showed some effort to roll from back to side. He is working really hard on keeping his head up and he did a great job with Andie on Tuesday. He held his head up in the wheelchair for me over the weekend for over 10 minutes. I'm so proud of him. I just need him to talk. I can sense he is scared...scared about his body especially. If he could only talk...can you focus your prayers on this, too? On a lighter note, I do think Anthony has found a way to get our attention. Actually, he did this a couple times when we were in the hospital, usually when I was out of his sight. But I hadn't heard it in a long time. He seems to do this mainly at night when he is in bed. He will let out "mh mh"...so hard to spell it!! Can you hear me doing it?! Whatever sound you are imagining, it is a two syllable sound. It sounds the same everytime. I go in his room when I hear it, tell him I heard him calling me and if he needs me again, I will hear him and come running. While in his room, his heart rate lowers and if I lay my head on his pillow, he closes his eyes and falls asleep. One night, everytime I left his room, five minutes later, he did it again. By the sixth time, I stayed until he was in a deep sleep and he slept all night. It's a start, right?

I haven't been giving much praise to the Lord in my entries lately. It's not for a lack of being grateful to Him. I guess there are times when I wonder where He is. I know He hears me and feels my desperation. And I know He wants Anthony to be well. Maybe the devil has snuck in a crack, afterall, there are many! I remember Carolyn writing about Jonah, I think, and how the angels said they were trying to reach him but couldn't. Help me out, Carolyn!

Thank you, Marty, for driving Anthony and me to clinic. Thank you, Domini, for watching Laura and being the unofficial school bus for the Buenaventura Court cul-de-sac! Thank you, Lorrie, for spending your last day off of the summer watching Matt and Laura while we took Anthony to Philly. Thank to all for your love and prayers. And food!!

Love
Michele

Friday, September 2, 2005 10:59 PM CDT

Time always seem to escape me. I can't believe it is Friday already.

Yesterday, September 1st, was Anthoy's transplant anniversary. His "new birthday" so to speak. It was also Mike's first day back to work in over a year. Needlesss to say, we were all on pins and needles. Matthew and Laura were in shock when they woke up and Daddy was at work. As much as we tried to prepare them, it's been a while for them, too. It was comfortable to be home all together. There is certainly a level of security having both of us around, for the kids and for us! Fortunately, working in the high school, the school day ends early. Good for all of us all around! I know Mike had reservations about going back to work and I know I was afraid to be home without him. I've come to rely on him so much. He is an excellent father. I know I take him forgranted many days. Luckily, our friend, Chris, came to my rescue and spent the day with me and the kids. Thank you for the enourmous help (and for sacrificing your day away from your daughter!).

The day's excitement didn't end there. It was a milestone day for everyone. Laura missed kindergarten orientation day because is was on a Tuesday, so we arranged for her to visit her classroom yesterday. And Matt got to meet his first grade teacher and check out his room. Matthew couldn't wait until Mike came home because he knew that was when we would leave for school. He was adorable as we were parking. He said, "I'm so nervous!" Definitely a nervos excitement for him. Laura has Mrs. Lane, who Matthew had and whom we can't say enough great things about. Matthew has Mrs. Siek. She's as wonderful as we have heard. Matthew wakes up each morning announcing the countdown to the first day of school. I hope his enthusiasm lasts past the first week!

We learned today that Anthony's test for CMV this week came back positive -- boo hoo!!! No plan to treat him yet. Once again, we are hoping it is a blip in the radar and his growing immune system will keep it in check. We've been down this road so many times that the pessimist in me would say he'll be back on Foscarnet next week. But the faithful part of me says he will beat this on his own with the Lord. If only it wasn't so hard to be the optimist!!

Physical therapy was status quo this week. One progress is Anthony is up to 60 degrees on the tilt table...meaning he is standing at a 60 degree angle. The max will be 80. I'm praying every night that Anthony breaks through and progresses in leaps and bounds.

Prayers for Brittany who is back in CHOP with a fever. She's at a tough phase of her regimen but we know she's tougher.

Enjoy your weekend. Anthony will go to clinic on Wwednesday next week so I can be home for Matt and Laura's first day of school.

Love
Michele

Tuesday, August 30, 2005 10:20 PM CDT

Okay, a quick update for now since we haven't been posting too often. Clinic went well. Here's the low down...

Anthony...
This Thursday marks Anthony's one year post-transplant. He got to celebrate it today by starting his immunizations over! He got four shots today!! YIKES!! His weight is the same this week which means he's getting a good amount of calories, finally. His labs look good and his white cell count actually dropped below 30 for the first time in a long time.

Matthew...
I think the highlight for Matt today was he got his blood drawn without crying. Other than that, he is a transplant doctor's dream. Dr. Aplenc said you would never know what's he's been through looking at him...something to that extent. Oh yeah, he gained another pound!!

Laura...
A pound!! Laura gained a pound!! No labs for her today since they were drawn last week. They still want to see her every two weeks for now just to keep a close watch on her weight. She was a very brave girl today because the tape on her face that secures the nose tube was changed. There are two pieces of tape to secure it and she had it done without a tear and better yet, without mom there!!! Laura said Carrie is the best dressing changer ever. I say Laura is the bravest girl ever!

Thanks, Lorrie, for coming with us today. What a way to close out your summer!!

Love
Michele

Sunday, August 28, 2005 6:49 PM CDT

Hi,

We had a nice,uneventful weekend. It started with a trip to Lorrie's and Marty's pool on Saturday. A month ago, we were told we could go to one house, that had no children or pets in it and is very clean. If you know Lorrie...enough said. Matt and Laura enjoyed the pool with their cousins Olivia and david. Anthony didn't sleep well Friday night, so he made up for it by sleeping about 5 hours in the afternoon. I have to admit, it is such a struggle for me to go somewhere (like a barbeque) with anthony and not have a bombardment of emotions. With each breath,I am just as close to a laugh as I am to a tear. To see life move on without anthony being an active participant overcomes me with emotion. When I am home doing his physical therapy or meeting his daily needs, I am ok, but when something involves enjoyment, it saddens me...... it doesn't alter my faith or determination to get anthony back to the way he was before transplant,but it is something I must do better with, especially for Matt,Laura and Michele. So, as always, i will turn to my faith in God and ask him for the strength to overcome this emotion.
Anthony's sinus infection continues to drain. He ends up with alot of mucous in his stomach. His feeds are at 54 for 16 hours. TPN coming to an end will hopefully be just a few more weeks away. Matt is as energetic as ever. He is as strong as an ox again. He will probably register 2 to 3 lbs heavier on Tuesday (all the kids will go to clinic). Laura becomes more like herself every waking moment. It is such a joy to see her back to herself. Thank God.
Another request for prayers. Just like when we were in the hospital, we would pray for God to send the right people into our lives. Weather it be doctors or therapists, etc. Now as we look to hire a speech and occupational therapist, we ask for these special intention(Just like Andie our P.T. was sent to anthony). While on a prayer roll, We are in the process of trying to get Anthony the homebound services from the Toms River school system. Our requests will probably be met with some resistance ( as it has with the 504 plan request we put in for Matt and Laura to have tutoring immediately in case of illness). Please pray for these people and a path to continue to be paved for anthony's complete healing.
Special thanks to Ellen Begley and Andrea Mangini-Harold for their time in helping michele and I deal with the CST school process.
See you soon.

Mike

Sunday, August 28, 2005 6:49 PM CDT

Friday, August 26, 2005 9:39 PM CDT

I spent the day thanking the Lord quite often today. While the progress Anthony makes is so slow going, any step forward, no matter how small, screams for thanksgiving. And we have had lots of reasons to do so this week. For starters, Anthony's congestion is getting better every day. We asked for relief for Anthony with the sinus infection. See? He hears us! While some days are worse than others, the good ones are significantly better. Like today, he didn't have much mucous to clear at all. Anthony also has been sleeping better since the antibiotic began but the last 3 nights have been wonderful for him. The magic cure? Vicks Vapor Rub on his chest! Yes, with all the technology and medicine these days, the old fashion remedies are still the best! Another positive is we are starting to see the results of the botox shots. Anthony's right hamstring is looser. And his right ankle is showing some improvement, too. The last time he was on the tilt table without his boots, his right ankle was turning out. Today, no turning! Another one? In therapy today, Anthony flexed his left foot. As Andie described it, the muscle that flexes is functioning because either the tone in his leg has lessened (which we know it has) or the muscle is getting stronger! Can you stand one more? Anthony is CMV NEGATIVE this week! While his last two numbers were low enough to be considered negative, this is an official "we don't see any"!! That makes 3 weeks CMV free and he's been off the medicine for almost 2 weeks!! Praising the Lord so much for all these wonderful things.

And more praise to Him for Laura. She has returned to her original feisty, funny, adorable self! She runs outside to play, jokes with company and isn't attached to my leg! A BIG allelulia!!

Matthew is so excited to be going to first grade soon. He is living life like he should, with some restrictions, of course. But he is certainly living it large and loud!

Thank you to those who cook for us. Thanks to our cleaning ladies. You do a great job. Thank you all for your prayers and love. It's the most important thing you can do.

Then shall ye call upon Me, and ye shall go and pray unto Me, and I will harken unto you...Jeremiah 29:12
Amen to that!!

Love
Michele

Tuesday, August 23, 2005 9:12 PM CDT

Okay, so it's been a while again. Our last entry was Thursday. The next day was Friday (duh!) August 19th--the year anniversary of when Anthony started this journey and entered the bone marrow transplant unit at CHOP. Needless to say, it's been an emotional weekend. Hard to put words to the thoughts that have been running through my heart and mind. But they range from thanksgiving to desperation. Thanks for where we have gotten to yet desperate for healing. Desperate for the return of my precious son, the one who walked into AND out of transplant.

Enough of that...today was a busy, hectic, productive clinic day. We did just about everything we could to totally exhaust Anthony but it was all for the good. Matthew is on a monthly schedule so he got to spend today with Lorrie and his cousins, Olivia and David. That's always a great day for Matt.

Laura has been amazing the past couple of days. Much more energy, less clingy, chatty and quite animated. Much like the old Laura. And did I mention talkative? The disappointment of the day was she had no weight gain. I couldn't believe it. Two full weeks of tube feedings and she looks like she's got more meat on her, but no extra ounces. There are several theories, all of which make sense. One is she's burning it off the more energy she gets. Another is she may just need more calories than they calculated. The third is her body is still fighting off whatever infection she had during the last hospitalization which is increasing her caloric requirements. So, we are going to add one more can to total 4 cans of formula a night through the tube. Ironically, she's been eating better, too...not great, but better. I talked to Laura today about going to school with the tube in. She said, "I don't mind. I don't care if people see me with the tube. I just care about me." See? I told you the old Laura is coming back!

Anthony, on the other hand, is packing on the pounds. Almost one more this week, putting him close to 57 pounds. Now, this may not sound like much for a 9 year old, but Anthony is a little 9 year old. Anthony is the one who held steady at 49 pounds for a year. We stressed our concern about the weight and hope they REALLY cut back on the TPN. Right now, he is getting 50% of his caloric requirements from the IV nutrition and 50% from the tube feeding. But we think, based on how much weight he has gained in the past 6 weeks, that they have him at too high a daily calorie need. Anyway, he's gaining too much weight and we want them to cut back! Other than that, his labs look good. His white cell count continues to be in the 30s range (normal is about 5-15!) but we are learning to live with it. So, the hectic part came in when the transplant team made arrangements for Anthony to get his second round of botox and we had him getting fitted for new soft hand splints and recasted for new foot boots. The botox was to loosen up his hamstrings and right ankle. His hamstrings haven't lost any range of motion but they are tight. His right ankle has lost a tiny bit of range but it takes A LOT of stretching to get it where we want it to be.

Please know that all your hard work and devotion to the kids through fundraising is put to use every day for co-pays, medicine, splints, equipment and supplies. Because of you, we were able to recently purchase a tilt table for Anthony (thanks, Kathy, for making this happen). This is a table Anthony lays on, and after we strap him in, we crank it up to stand him! This table is great for weight bearing and stretching. He's been on it twice so far and did great. Andie wants us to go slow for a little, so we have only cranked the table up to a 45 degree angle. I can't wait to get him higher to see how tall he's gotten. This is why we had him recasted for new foot boots. Right now, the boots he wears are soft. The new ones will be hard for standing.

Through my emotional roller coaster this weekend I came across a passage that I remember reading once before (how you special people can memorize scripture is beyond me. What a talent I am envious of!). It came at a perfect time.
"In nothing be anxious; but in everything by prayer and supplication with thanksgiving let your requests be made known unto God." (Philippians 4:6)

I persevere and make MANY requests known to God and I pray everyday for the patience to await His works. I still have total faith in complete healing. It just gets a little foggy some days. Anniversaries especially. This weekend was hard but persistence prevails. No time to be weary. I am reminded of that everyday through Anthony. His strength renews me. In nothing be anxious...I'm trying.

Love
Michele

Thursday, August 18, 2005 9:28 PM CDT

First, let me say what a great idea you had, Marjorie!! For anyone who didn't notice her guestbook entry, Marjorie, my brother-in-law's (Ron's) sister suggested people add a blurb about their connection to our family. It's been a lot of fun for me to read...and I already know how I know most of you!! Keep them coming.

So, it's my turn to add my two cents. We had a great family day on Monday. Matthew and Laura have been begging to go to the boardwalk to play games. They like the rides, too, but know the "germ factor" is too high. They just wanted to play in the arcades. So, with the go ahead from the transplant team and armed with disinfecting wipes, that's what we did on Monday...all of us. We spent the afternoon at Point Pleasant boardwalk playing every crane game we could find (dejavu for me as I got out Saturday night with my friends, Patty and Pam; we went to the Tiki Bar but had more fun playing in the arcades, too!). By the end of the day, everyone was pleased with their prices. We can't say it was a normal family outing because Anthony couldn't enjoy it the way he should. The boardwalk is one of his favorite places, next to Disney World. We looked for any glimpse of expression we could find on his face. I thought he seemed content, like he knew where he was. It's just so hard; Anthony shows no emotions right now...except for crying when something is hurting. What I wouldn't give for a smile...

Tuesday was a nice clinic day even though we had alot to accomplish with 2 different clinic visits and a CT scan. It was nice to be able to focus on just one child for the day. It was also the sixth night in a row for Anthony not sleeping. So, the findings of the CT scan were so bittersweet. Great to have an answer for the drip and frustrating that it had to go on for so long before someone listened. Anthony is getting Levaquin for it...a very potent antibiotic. Hopefully, 21 days will bang this sinus infection out of the park for him. Last night was a much better night for Anthony...a little congestion and drip but not enough to keep him up. I'm praying it wasn't a fluke and he will get good night sleeps from now on. It's so important for his healing. He needs his energy to focus on his therapy. He's working really hard on holding his head up. On another note, Anthony's CMV level was in the 200s this week; a number under 500 is said to be a negative result. So, they have stopped the Foscarnet(the IV medicine he's been getting for the CMV). Praying real hard that this virus is finally a thing of the past.

Matthew accomplished a big feat for himself last week...he jumped off his friend's diving board. Not bad for a kid who had a transplant 8 months ago and was fighting for his life in the intensive care unit 6 months ago! He started complaining about his right ear Thursday night. The first time I looked at it, it looked fine. But later, it looked a bit inflammed. I'll give a call to clinic in the morning and see if they will start him on an antibiotic. After all these kids have been through, I'll take an ear infection!

Laura, Laura, Laura...it breaks my heart to see her broken spirit. She waxes and wanes from happy to sad in mere seconds. She has had moments of great playing time with Matthew. She had a great time at Lorrie's on Tuesday playing with Olivia and David (their cousins). But she often gets downtrodden. She only talks to me for the most part. She only wants me to do things for her. If given the choice to let Daddy help or wait until I'm done, she always chooses to wait. I know a lot of this stems from the last few hospitalizations when I wasn't with her. She is having some severe separation anxiety compounded with regression. Eating continues to be an issue, too. If only there were countless calories in fruit, carrots and salad (with only oil and vinegar, of course). She does look better, though. I can see more meat on her scrawny body. I'm hoping she meets a good weight before school starts so we can pull the tube and start school on schedule. I think that will help alot.

Thank you, thank you, thank you to Valerie, for bringing your dogs by. Valerie raises seeing eye dogs and her own dog is a therapy dog. They were so gentle and sweet. Matthew was, of course, in his glory. Laura was, of course, admiring them from afar. Anthony was silent about the whole thing...I, too, am curious to know what he was thinking when we had him pet Sydney. The kids loved it. Thank you so much for sharing them with us!

Mike and I have been exhausted with Anthony's sleepless nights. We keep saying that it's got to get better. Praying for better nights and days ahead!

Love
Michele

Tuesday, August 16, 2005 10:15 PM CDT

Hi all,

Abit tired after a day trip to Philly. So we will give a quick update and fill you in on more tomorrow. As Michele and I have felt for sometime, the CAT scan confirmed Anthony has a good size sinus infection. We think he has had this for several months and it just took off recently.He will go on a 21 day antibiotic tp clear it and a scan will be repeated in one month. Hopefully, this will clear his drip and he can get a good night sleep so his energy can go into therapy, where it should be. His G.I appt went well, the goal is still to get hom off of tpn asap. The bone marrow team will push G.I. to get anthony off quicker, even if it means a loss of a few lbs until we get to his goal. We are grateful to them for this and anxiously await the day tpn is a thing of the past. Also, it looks like this coming week will be the last for foscarnet. Dr. Bunin thinks anthony's body has control of it now.YEAH...the letters CMV have been a nightmare since last September. .........Speaking of the bonemarrow team....we would be remiss to not mention a few of the people that make clinc special for our family. Ginny, the nurse practitioner, has been so special. She is our guardian angel. She always gives us special treatment and helps us get through the clinic day ASAP. She is a special person, and all the kids in the clinic are blessed to have this person. Also, the two nurses that take care of the kids each week, Carrie and Meghan are great at what they do and make the day alittle brighter. Meghan also took care of Laura in transplant and anthony going back to last fall, before switching to the clinic. Thank you so much ladies.
Matt and Laura stayed with Aunt Lorrie and Uncle Marty (the gogurt goes in the refrigerator)today. Thanks guys. Also thanks to Aunt Lisa for bringing Olivia and David there so all 4 of them could enjoy the day together.

Thanks for all the hits on the guestbook. Michele and I enjoy hearing from all of you. Keep it coming..especially the lookers who don't identify themselves or haven't in a long time.

God Bless you and your loved ones.

P.S. -please remember in your prayers a cancer patient I met last week, her name was Kaitlyn-she is about 14. I met her when the team asked me to talk to her and her dad about the benefits of a G tube until she can eat again.

Mike

Monday, August 15, 2005 9:55 AM CDT

Hi all,

After another long night up with Anthony, it can become easy to forget the blessings that we have received over the last year. The fact that all of us are home together after spending 10 months in the hospital is a gift from above. All three children have completely engrafted and the one year mark (return of immune function) is in plain sight. Who would have thought that Anthony’s biggest problem (other than the rehab, of course), would be a bit of sinus drip that gets stuck in his throat during the late hours of the night (2am -5am is the routine). But, even the longest night here is better than the shortest one in the hospital.
Here go the updates….. Anthony… he is the only one who has to go to Philly tomorrow. He has a morning GI appt. All is going well with his feeds increase, he is up to 40 cc’s an hour. His goal is 90….but tomorrow I want to ask how high he has to be so we can stop the TPN nutrition. Back in February, the number was 70. He also has a cat scan of the sinuses scheduled; hopefully we can get some answers to help with the sinus drip problem.
Matt ….. Matt is Matt, do I have to say more.
Laura……she continues to improve, she is eating more than she was two weeks ago, but still needs to maintain consistency. Her endurance is a lot better, and we wait for the day our little girl is her old self again, physically and mentally.
As we move along, we are also thankful to those of you who still offer assistance in way of cooking a meal, helping clean, visit the kids, tutor for school or just offer prayer. Our days are still long and demanding and the little things you do (which may seem small in your eyes) are so big to us so we can spend the time needed with the kids, especially Anthony. Special thanks to the Hooper Ave teachers who have taken the time to help prepare Matt and Laura for school this fall. Mrs. Lane…we can never thank you enough for what you did for Matthew. Michele and I are thankful you have become a part of our lives.
Lastly, prayer warriors, keep the messages going to the heavens for complete healing, especially for Anthony to talk and be able to endure the pain that comes with his physical therapy. Let him feel God’s love and guidance as he struggles to regain the use of his body and mind. Also pray for guidance for Michele and me to know the right decisions of his care.
Don’t forget to sign into the guestbook once and awhile to let us know you are still out there.

Mike

Thursday, August 11, 2005 4:08 AM CDT

The last entry was Sunday?! Wow...we're really slacking off. And, again, it's not for lack of things to say.

Tuesday was clinic day for everyone. Always a little more hectic when all three need check-ups, always more hectic when Matthew is involved! No one can keep up with that kid!!

Anthony is still struggling with the mucous. He's got more in his lungs, too. We tried to get a cat scan done while at clinic, but we would have had to wait around for 4 hours and that's just not possible for Matt and Laura to do. So, being that this isn't really anything new or pressing, we have one scheduled for next Tuesday. They will scan his sinuses and chest. On a good note, Anthony slept well Monday and Tuesday night. And, so far, good Wednseday night, too. Good news on the CMV front...his level is down from 1700 to 171!!! We are getting so close yet again to making CMV history. CMV-free, plese, Lord...one less virus to deal with please.

Regarding weight, I thought it would be better to talk about them all here. Anthony is topping off at 55 pounds, some of which is excess water from too much TPN (we are adjusting that this week). Fifty-five pounds is pretty significant for Anthony as he hasn't been over 50 pounds since last year. Matthew gained a whopping 3 and a half pounds over the last two weeks. Anyone who has seen this boy eat shouldn't be surprised. He's up to 45 and a half pounds!! I'm pretty sure he has exceeded his pre-transplant weight. And Laura gained, too! She gained almost one and a half pounds in a week! Praise the Lord, she's on her way! You can definitely see it on her, too. I think her face is fuller and her ribs aren't protruding.

The kids have had immune function tests done that we now have the results for. Let me explain them first. There are two tests that they do...one checks to see how many t-cells the body has and the other checks to see how well those t-cells function. T-cells are the body's best defense in illness and infection. Transplant depletes the body of all t-cells and it takes time to regain them. For Anthony, he has lots of t-cells, but, unfortunately, not many of them are functional. His are still immature, most likely from frequent infections, CMV, and having had graft vs. host disease (GVHD). Matthew, on the other hand, has a good amount of t-cells for 8 months post-transplant and they are all functioning! Laura also has a good amount of t-cells and most of them are functioning. This doesn't mean their immune system is totally healthy. This is where they should be. Anthony, of course, being further out of transplant than the other two, should be further along. But nothing has come easily to Anthony on this road. But, being the fighter he is, he will catch up soon. For Matthew and Laura, knowing these results makes it easier for us to send them to school. The doctor reassured us that they aren't concerned about them getting a serious infection. They are still more prone to get sick if in contact with someone sick, but the seriousness of the illness is low. We still worry about any fever and they will need to be seen if it's over a certain number to have blood cultures drawn and receive an IV antibiotic. Their restrictions won't change until they go back to school. We still will be very cautious about where they go and what they do. While these test results are great news for Matthew and Laura, we have to remember their immune system is still compromised. I won't feel totally at ease until I hear a doctor say their immune system is TOTALLY functional. Won't those be great words to hear.

So, enough about clinic. Anthony did great in PT Monday. Andie had his wheelchair completely upright and Anthony had to keep his head up, resting against the head rest. I can't say I can think of a time when I saw him do this before. So, you can imagine my shock when I saw him hold his head up for over 3 minutes! I think we were all shocked! Now, he may not do this again this week, but doing it just once counts for a lot!! He hasn't rolled over again the way he did for Mike, but we now know he can do it. So, now we know he can push against the headrest for a long time, too!

We had a last-minute kiddy party for Laura today to celebrate her 5th birthday (her actual birthday is July 3rd, but she was in the hospital then). This was very good medicine for her. She played, she ate, and she was on the go the entire day. Her posture looked great, her stamina was so much better and she didn't need only mommy today! She passed out at 7:30, though! Good for her!

Matthew would want me to mention that he got stung by another bee today. This time he wasn't so brave. It nearly ruined his entire day. But, being the Matt we know and love, he recovered...after about 2 hours, but better late than never!

I'm sure there are things I'm leaving out. That's what I get for going so long without an entry. Physical therapy Thursday for Anthony and Laura.

Thank you all for validatiing by feelings lately. I am in a much better place. God and I have smoothed it over! The deal is I won't yell anymore (well, at least not for a while) and He will step up the healing time. We didn't shake on it, but I know He's good for it! I'm counting on Him. Please, Lord, guide us in the right direction to speed the healing for Anthony. Lay Your healing hand upon him and let him find comfort in knowing he will be stored. And, please, Lord, above all, let him know it is safe to talk.

Love
Michele

Sunday, August 7, 2005 9:41 PM CDT

Well, I can't say much about the weather today because I spent the day catching up on sleep. Anthony had a restless night last night. He has been having a post-nasal drip that is worse at night. The past few nights, he has been up gagging on something caught in the back of his throat. Saturday night was the most unsettling for him. No matter how much he coughed or tried to clear it, he just couldn't get relief. We have been trying some allergy-type medicine with the hopes that it will dry the mucous up but we aren't having much success. Still struggling at 3:30 in the morning, Mike and I moved Anthony downstairs. I think he finally fell asleep out of pure exhaustion by 4:30-5 AM. I was at my weakest last night. I was so angry at God. I told Him I couldn't believe He was ignoring our requests for a simple good night's sleep for Anthony. I told Him I was mad at Him. That I turn to Him everyday but here I was getting disappointed. I am ashamed of myself for feeling this way when I think of all the answered prayers we have already received. The frustrations never end, though. It pains me to see my children struggling. It is a daily uphill battle physically and emotionally on all of us. Last night may have been the culmination of my frustrations. Afterall, is a good night sleep too much to ask for? I can see needing to be patient for the big things, but couldn't this kid just get some relief from mucous of all things?! It seems silly to focus on something like this but I think, deep down, it's easier to be mad about the little things than the big ones. I just want to wake up one morning to Anthony calling out "Mom", and asking what the heck had happened. This is the miracle I pray for everyday. A lot of my frustrations stem from not being able to talk with Anthony, to know what he's feeling and to know what he needs me to do. Lord, I'm going to hound you everyday to lead Anthony out of his silence. And, now that I'm not so sleep deprived, I'm sorry for being mad with You. But, really, could You just get rid of this mucous thing??

Thank you to my parents and Janice for coming today. I couldn't have napped without you here! Thank you, Mike, for bearing with me in my tired state...I know I'm not the easiest person to be around when I'm exhausted. Thank you Andrea for all your help to get ready for the fall. Thank you to all who cook and clean...we are most grateful.

By the way, Matthew and Laura are good. Matthew got stung by a bee but his courage showed when he escorted Maddie, who was also stung, to her doorstep before coming home to cry. Laura's personality is emerging more and more every day but she is still in "mommy only" mode. This makes it very challenging for me to spend quality time with Anthony. For this, I feel most guilty. Like I need any more!

Love
Michele

P.S. I keep forgetting to thank the guys for taking Mike out last week. You guys are great friends...but do you think you could stay out longer than 2 and a half hours next time? Really, that's pathetic.

P.S.S. Glad you all are enjoying the faster guestbook, thanks to Janice. And hopefully, we won't have any more snaffus...right, Horpicorn??!!

Friday, August 5, 2005 1:09 PM CDT

When will this heatwave break already??!! Anthony hasn't seen the outside of this house for some time now. I'm not sure what it's going to take to get him to break out of his silence, but I do know that being couped up with Matt and Laura is not helping!! Well, I guess I can only speak for myself!

Kidding aside, the Tomaino kids are trudging along. Matthew is smiling from sun up to sun down. And he's going full steam ahead as always.

Laura is tolerating the nighttime feedings through the tube very well. She is eating better during the day and even looks better. Her face seems a little fuller, too. She is doing well with physical therapy...her posture is getting better and so is her endurance. Don't get me wrong...she still walks like grandma when she's tired and can't walk for long stretches, but she has come a long way in a couple of weeks. My concern is how much she has regressed and needs me. She relies on me for everything and refuses anyone else's help if I'm around. I know I'm perpetuating the cycle by giving in to her demands but I feel so bad for all that she has had to endure. I want to see her back to being self-sufficient...I know that sounds weird because she's only five, but this is the child who came out at an 8 to 10 year old level for self care and domestic abilities when she had neuropsych testing prior to transplant!

Anthony is fighting through the hip discomfort. In fact, he found a way to make it feel better...he rolled over last night! Like how I sneaked that in! I didn't get to see it, but Mike said he was laying on his back, obviously not comfortably because he was bending and extending