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Tuesday, June 8, 2004 11:10 AM CDT Hello everyone.....It's been such a long time since I have updated Manny's webpage. It's been really hard to be able to write anything knowing that I don't have any news to update about Manny. And, it hurts very much to say anything at all. But, I feel as though I need to at least let everyone who supported our family through all the good and bad an update.
Stephen, myself and the kids are taking it day by day. Stephen and I look at life in a completly different way. We look at our kids and try to spend every min as if it were our last. That's a good thing, because we realized how precious time and life are.
We are both working again and trying our best to keep going. There is still not a moment in the day that's goes bye that Manny is not on our mind. I think it's going to be that way for the rest of our lives.
Samantha and Stevie are doing great. They are with Grandma Cecilia and Grandpa Frank in Ohio visiting. Stevie is almost completly pottie trained. We are so proud of him. Samantha is so bright and is already starting to write her her name. We miss them so much, but they are having a great time. It's giving Stephen and I a chance to spend some much needed time together.
Again thank you everyone for all of your support and I will update Manny's page to let everyone know what's going on with us.
Take Care and God Bless
Sunday, November 9, 2003 11:25 AM CST This past Thursday night my mom(nana Rosa) stayed the night with Manny at the hospital. He did really good throughout the night. He's been comfortable, and every now and then we've been getting some smiles. My mom said she layed with him, just hugging him, and giving him as many kisses as she could.
Friday morning my mom called me and said that Manny was fine, all of his vitals were good and that he was sleeping. 15 min. later she called me back and said that she thought I needed to get to the hospital as fast as I could, because Manny's breathing had changed really fast. Stephen, and I, my sister's Andrea, Vanessa, and my brother Tommy ran to our car's and started driving to (CHOC) as fast as the cars would take us.
When I ran into Manny's room I saw the change right away. I took Manny into my arms and rocked him back and forth, telling him that we were all there with him. Every minute that went by his breathing was shorter and shorter. I hugged him as tight as my arms would let me, and told him that Mommy and Daddy loved him. And that Nana, His Nino Tommy, and his Nini Andrea, Vanessa, and Ronni loved him too! On Nov. 7th at 11:13 AM Manny took his last breath and was free.
He was finally free from this disease, all of the pain that he's had. No more medicine, or blood pressure checks. No more Doctor's poking at him. He not scared any more because he can't see us, or hear us. He flying high, and smiling. He's our Angel, and I know that one day in Heaven I will see him again. There's no way to describe what it feels like to lose Manny. The only peace that we have is knowing that he's disease free, and pain free. Manny fought long and hard, and some people may say he lost his fight, but he didn't he won because he's where all of us wish we will be some day.
Manny we love you and miss you so much!!!
Don't ever forget what you always told me. "I'm your special boy right mom!" alway, always Manny.
***********************************************************
Services will be at:
November 12, 2003
6:00 PM
Mass
St. Frances of Rome Church
Azusa, Ca 91702
November 13, 2003
8:30 AM
St. Frances of Rome Church
Internment- Resurection Cemetery
Montebello, Ca
Thank you to everyone for all of your support, and for always keeping up on our updates for Manny.
Tuesday, November 4, 2003 3:39 PM CST Well not a lot has changed since our last journal entry. The days feel long, and we are so tired. Manny hasn't shown any real improvements. His platelets are still under 10,000. All of his lab work is either in the high, or low range. Nothing seems to be in the normal.
It's been a whole month now that Manny has been getting platelets daily. Some days even two units. He's also been getting blood transfusions about every 2-3 days. We can't even keep up or keep track of how much.
We are trying so hard to stay strong, and to keep fighting right along with Manny. I know that he is suffering so much more then we are. Stephen and I wish so badly that it were to be so simple, that we could just shake him and that he would be himself again. So loving, and funny. It hurts so much. I wish that he could hear us tell him how much we love him. We just try to soak in every moment with him. We look at him staring for hours trying to memorize the faces that he makes, the way he looks when he sleeps, every little hair on his head.
We were able to hold him in our arms for the first time in weeks. Rocking him back and forth in a rocking chair. We hold him as tight as possible, so that he knows that it's us, and that he feels safe in our arms.
Even though we are back home, around family and friends nothing feels the same without Manny being able to share every moment with us. Sometimes when we take Samantha and Stevie out to get a bite to eat, the whole time we just keep thinking about what it would be like to have Manny there with us. Out of the hospital, alert, able to talk and see us. 7 months ago we never in our wildest dreams ever imagined that our life would have changed so much.
Melissa and Stephen
Wednesday, October 29, 2003 8:33 PM CST These past few days have been pretty hard days too handle. Manny still hasn't made any improvements. His platelets are still very low, they've been in the 1-5 thousand range. The Doctor's here at CHOC have tried to make small changes in his medication. They explained to us that changing some of his meds might help and make a difference. The medication plan that was originally made hasn't done anything for him. So we agreed praying that Manny would start to improve.
Yesterday for most of the day Manny had a fever and reached it's peak of 104.3. He was shaking a lot, almost showing all the signs of a seizure. A CT scan of his head was done showing no seizure activity. So, of course Stephen and I are completely losing our minds thinking none stop of what is causing Manny to do this. We still have no clue what is going on in side of his head. They started him on a continuous Versed drip, which is a sedating medication. He was given that for aggitation, and to help with all of the shaking. He is also getting some pain meds.
In our eyes Manny is suffering, and watching him everyday slowing continuing to change is heart breaking. We've asked that we do everything in our power to make sure that Manny is comfortable, and resting. The problem is, is that these types of medication can slow his heart rate, and slow down his breathing. So, we are trying to prevent that from happening.
We've talked to both Dr. Phillips (Neurologist) and Dr. Nugent (Oncologist) about what other options are out there to help with Manny's care. We were told that we've done everything we could, and Manny has not responded to transplant. There is no other treatment for him. His disease has infact progressed. At this point we are trying to keep Manny comfortable, and make sure that he isn't in any pain.
Our hearts are once again crushed having learned that Madison Mitchem has passed away yesterday Oct. 28, 2003 at 9:00 P.M. at home with her mommy and daddy Mike and Marion Mitchem who were also at Duke with us. She has fought a long battle of Infant Acute Lympoblastic Leukemia since August 8th, 2001.(iALL). Mike and Marion are incredible parents and have been such a blessing to my family. We meet in the family room at Duke Hospital and we're happy to find out that we were both from Southern California. Marion and Mike we love you so much, and are so sorry for the loss of your princess.
www.caringbridge.org/nc/princessmadison
Please pray for Manny and Madi's Family
Melissa
Saturday, October 25, 2003 5:45 PM CDT MANNY IS HOME!!!!!!!!Back in California, and we are so happy to finally be here.
Manny and Stephen arrived here in California on Thursday. The flight went well, and Manny tolerated it pretty well. He was immediately taken to the Children's Hospital of Orange County(CHOC). The staff here have been great.
Manny's platelets continue to stay below 10,000. All of his counts have been low. He's been getting a unit of platelets daily, and has also gotten blood transfusions about every 4-5 days. Last night around 2:00 AM Manny spiked a fever at 104. He was packed with ice, and given tylenol. It went up and down throughout the morning. He's also had some respiratory problems, and is on oxygen. He's breathing fine on his own, he's just getting a little help. This morning he was transfered over to the Oncology Intensive Care Unit(OICU), so that he will be able to be watched closer.
We still are not sure exactly what is keeping Manny's levels so low. So, over the next few days they will be running some test, and keeping a close eye on him. We aren't sure when we will be able to take him home, but right now Manny is be taken care of by a great team. Stephen and I definetly could use the break. All of our family here have been very supportive offering to stay with Manny to catch up on all of the time they missed spending with him.
There is a computer here on the floor, so we will keep you updated as often as possible. Stephen and I would like to thank all of our friends in South Carolina who have helped us pack, and most of all get us back home together to California. Thank you so much Kerrie, and Rachel, Louise and everyone else. Please continue to pray for Manny's recovery.
P.S. Now that Manny is back home in a hospital close by we know that friends and family would like to visit, however Manny is still very sick and fragile, and we must limit visitors to immediate family only for his safety. We are so sorry we wish you could all give him a squeeze.
Melissa
Wednesday, October 15, 2003 7:53 PM CDT We have been struggling, trying to figure out what is going on inside of Manny. Last Monday Oct 6th Manny was admitted into the Children's Hospital in Greenville for a fever, and low platelets. He has been getting platelets everyday for the past 9 days. They think that his GvHD has come back.
When we read his counts we were pretty shocked. Manny hasn't has blood or platelets since we left Duke on September 2nd. A whole month and then out of nowhere he has a major complication again. For some reason Manny just can not hold on to his platelets. They went from being in the high 90's to 3 or 5. This past Monday night after getting a unit of platelets he was disharged from Greenville Hospital, and we immediately left to Duke, so that Manny could be checked out by Dr.K. We finally arrived at Duke at about 2:00 in the morning just to be able to rest for a couple of hours before having to head to clinic. Only 12 hours after getting that unit his platelets were very low again. He's starting to have bruises and a lot of redness throughout his body. From what we've been told Manny should recover from this. It's just going to take a little time.
Stephen and I have made the decision to take him back to California as soon as possible. We are so scared and don't know what the future holds for Manny. But, if there's one thing that Manny wanted most it was to go back to his Nana Rosa(my mom), and his Nino Tommy(my brother). For the past couple of days our whole house has been packed up getting ready for the move. Manny will be transported from Duke Hospital by ambulance to the airport where he and Stephen will fly with a nurse on board to California. At the other end there will be an ambulance waiting to immediately take him to Orange County Children's Hospital. Samantha, Stevie and myself will follow on another flight.
Please continue to pray for Manny's safety, and that there is a brighter light in California with our family.
Melissa
Wednesday, October 8, 2003 9:58 PM CDT Well last night was pretty rough. Stephen and I both stayed the night at the hospital with Manny. He was up all night. He's started to have pain and we didn't know where it was coming from. They started him on IV morphine again. That was the only time that he was actually able to rest a little(not to mention us too).
We headed for home around noon to eat and shower. Samantha, and Stevie also came home from staying with some friends here in Greer who have been helping us. We are all trying to stay strong and are praying for Manny to come home soon.
Stephen headed back to the hospital with Manny and I stayed here with the kids. He said that Manny has had a pretty good day. He seems to be very comfortable and will hopefully sleep good tonight. If he continues to do good he should be home by the weekend. If not they want to transport him back to Duke. We will keep you posted on Manny condition.
Thank you for all of your prayers.
Melissa
PLEASE PRAY FOR BABY NOAH'S FAMILY. HE LOST HIS FIGHT OF KRABBE DISEASE ON OCTOBER 7.
www.caringbridge.org/hi/noah
Monday, October 6, 2003 10:20 PM CDT I thought that we would be at Duke by now, but we had a change of plans. We were suppose to make a trip back for Manny's 1 month check up with Dr. K. but earlier today Manny was admitted into the Pediatric Oncology/Hematology Unit here in Greenville.
Manny has come down with something. He's had a fever for most of the day, and has been sleeping a lot. Of course as soon as we saw the numbers after taking his temp, we were on the phone with Dr. K. She told us to take him in and have them culture his lines, and see what his counts were. Everything was okay except for his platelets. They've been in the high 90's to 100's. Today they were 20. That was a big concern. Manny just doesn't seem himself, and hasn't for the past couple of days. The Doctor's here in Greenville and Dr. K would like to keep him for at least 48 hours.
We are praying that this is just a small bump in the road, and that he'll be home in no time. Stephen and I would like to thank Louise, and Keri our friends from Playgroup for helping with Samantha, and Stevie while we were at the hospital all day with Manny. They have truly been a blessing.
Please pray for Manny and his return home.
Stephen and Melissa
October 7, 9:15 AM
Manny's night was pretty stable. Stephen said he slept good. His fever broke last night finally. This morning his labs came back pretty low for Manny. At least a lot lower then what they've been. His white count is 1.6, Hemoglobin 6.9, and platelets 68. He's been holding on to them so good this whole month not needing any blood products at all. He's getting blood this morning. Dr. Hayes and Dr. K think Manny might have a viral infection. They've been running antibitocs all night. Manny still seems out of it. I know he's just so tired of being sick.
The kids and I are on our way over to the hospital. We will keep you updated.
Melissa
Friday, October 3, 2003 10:19 AM CDT Post Transplant Day 155
--HAPPY BIRTHDAY MANNY--
We are so happy to announce that our Manny is now 7 years old. We woke up this morning and went right for Manny's room. I was so happy to be able to hold him in my arms and wish him a Happy Birthday.
When we look back and think of all of the long days that we spent at Duke, there were lots of times that we wondered if we were going to see this day. We feel so blessed to have Manny here with us. Everyday is a struggle having to get to know Manny all over again, but everything that we had to go through has been worth it. We are all together and that's what matters most.
HAPPY BIRTHDAY TO YOU!
HAPPY BIRTHDAY TO YOU!!
HAPPY BIRTHDAY DEAR MANNY!!
HAPPY BIRTHDAY TO YOU!!!
AND MANY MORE.......................
HAPPY BIRTHDAY MANNY!!!! MOMMY AND DADDY LOVE YOU!!!
Wednesday, October 1, 2003 4:07 PM CDT
HAPPY BIRTHDAY MANNY!!!!!!!
Guess what everyone?
Manny's Birthday is on Friday October 3rd. He will be 7 years old. We are so thankful to be able to celebrate another year with him.
Everything has pretty much stayed the same. Manny's labs are great, no worries about that. But, we would like to continue to ask all of you to pray for his peace of mind. Manny has been crying a lot the past couple of days. We've tried to do everything we could to help calm him down and comfort him. We know that he's just scared and wishing that he could see us.
We are in desperate need of prayers!!!
We would also like to ask everyone to say some special prayers for Madison Mitchem back in California who is in the hospital, and Baby Noah who is in the PICU at Duke.
www.caringbridge.org/nc/princessmadison
www.caringbridge.org/hi/noah
Thank you for all of your support.
Stephen and Melissa
Thursday, September 25, 2003 7:31 AM CDT Things were a little rough, but are starting to get a little better. Last weekend Manny was throwing up non-stop. Everytime we turned around it was everywhere. That wasn't like Manny to do that, so of course we started freaking out, and wondering what was happening. We paged Dr. K, and she gave us instructions on how to handle it. So, we did and it stopped. All we had to do was give him Pedyalite. Who knew?
On Sunday, I walked into Manny's room to get him ready for the day, and as always I'm talking his ear off. And for the first time in months when I called his name, he responded. What I mean is, is that I scared him. So, I yelled for Stephen and he came running. I told him what happend, and he called his name again. Manny opened his eyes real big and looked around like what was that. We were so excited. We talked to Dr. K and she said that hopefully as time goes by it will continue to improve. We aren't sure what he heard, but it was something and we are so happy.
Manny still hasn't has a blood or platelet transfusion since we left Duke September 2nd. He is doing good. All of his lab work seem to be in the almost normal range. Physical Therapy and Occupational Therapy are coming twice a week to work with Manny. We can't wait to see him walking on his own again.
Please continue to pray for Manny and his recovery. We love you guys.
P.S. Manny ate Pizza and juice last night. He is on his way to getting that tube out. Yea!!!!!
Melissa and Stephen
Wednesday, September 17, 2003 7:39 PM CDT Post Transplant Day 138
Hey everyone,
Just wanted to give an update on what's been going on with Manny. He's still being seen twice a week here in Greenville. Dr. K is coming down for a conference so she'll be checking in on Manny this Friday. She is Manny's primary Doctor at Duke. She's great. She know's her stuff. We are pretty excited to hear what she has to say about Manny. Since we've been home Manny has not had platelet, or blood transfusions. We are so proud of him. Manny has always been such a fighter.
We are still dealing with the issue of trying to communicate with Manny. So far he's only able to identify his daddy. 95 percent of the time he's yelling for Stephen. I keep trying though, I'm praying that eventually he'll reconize me. I know it's going to take time, I just wish so badly that he knew it was me. These past couple of weeks, Manny has been smiling a lot, and laughing. We don't know what he laughing about, but we enjoy every second of it. As soon as one of us catch him we grab the camera and start to take pictures. He looks so cute, Stephen and I can't help but to hug and kiss him all day.
We are asking for everyone's prayers for our family. For Manny and another issue that we've been dealing with. As if Manny getting sick wasn't bad enough, Stephen was laid off from work a couple of weeks ago. Right when I thought we were going to come home and relax a little that happend. I have nothing nice to say about the company that he was working for. I guess in a word " Heartless". I guess our concern for the most part is our Insurance. All of the therapy's that Manny has been getting here at home will soon stop because our health insurance ends this month. Manny and our whole family have always had this insurance so we don't have anything to fall back on. Not to mention other financial responsibilities. Our hope is to go back home where we will have our family, and a better support system. Please keep us in your prayers.
Melissa and Stephen
Saturday, September 13, 2003 10:50 AM CDT Post Transplant Day 134
MANNY IS HOME!!!!!!!!!
We are so happy to let everyone know that Manny is home, and we are all under one roof together. We've been home for about a week now, and Manny is doing good.
It's the best feeling in the world to walk by Manny's room, and watch him in his own bed sleeping. Stephen and I stand by his door smiling and crying at the same time. We've waited so long to have Manny home again.
Manny is being seen here in Greenville at the Pediatric Oncology Center. The Doctors here are very nice, and seem to be up to speed with the whole transplant situation. Clinic days here are so much faster. We are in and out in about 3 hours. Manny's labs have been great. He hasn't had platelets in almost 2 weeks. His platelet parameter has to be above 20 and Manny is in the 70's or more. We couldn't believe it. He hasn't had blood in a long time either. The Doctors are really happy with Manny's progress. They are hoping that after our trip back to Duke in October, we will only have to go to clinic once a week.
Physical Therapy, Occupational Therapy, and Speech Therapy are all coming out to our house weekly to see Manny. It's kinda weird having strange people in our house all the time. It's going to take some time to get used to all of it.
We miss all of the families at Duke. We think about all of you all the time. We are sorry that we didn't get to say goodbye, but hopefully we'll get to see some of you when we head back. Our thoughts and prayers are with you.
We are just so thankful to be home, and that Manny is with us.
Melissa
Thursday, August 21, 2003 10:25 AM CDT Hey everyone,
I just wanted to let everyone know that Manny is doing good. He's having little stomach aches every now and then, but for the most part he's fine. He starting to talk much more now. He's very frustrated, but is trying his best to adjust to all of the changes that have happend to him.
His labs have been great this week. So far this week we've only been to clinic once. That was on Tuesday our routine visit. His plaelets have been pretty steady in the 100's. He hasn't had any since last Sunday. I am very happy about that. It means that hopefully the blood clots will stay away, and that his intestines will continue to heal.
He's tolerating his feeds pretty well. We're still increasing every other day. Haven't gotten to the 4 times a day feeds yet, but that's okay. When Manny's ready he'll let us know.
I've been pretty busy this week, because I kept Samantha with me. She really wanted to stay, and I couldn't be without her any longer. She's been trying to help with all of Manny meds. She likes to help get it all ready. It feels so good to have her and Manny together. She talks to him all day, and she's so proud of herself when she helps him sit up. She missed him so much. Manny asks about her and Stevie all the time. Samantha always says " I right here Manny". "I love you". It breaks my heart to watch them together.
We're praying everyday that Manny will continue to get better and recover, and that our stay here at Duke will soon be over. We don't have a date yet, but hopefully we'll hear something soon.
Thank you for all of your support, and constant prayers. I'll keep you all updates on Manny's progress.
Melissa
Friday, August 15, 2003 2:17 PM CDT Post Transplant Day 106
WE ARE OUT!!!!! Manny was discharged yesterday at about 2:00. He had some last min. meds that he had to get. But, it all worked out. I think that I was so excited about leaving that of course everything went wrong. I was finally finished packing everything up, and then I couldn't find my keys. So, I unpacked everything and still couldn't find them. I was already running late, and still had to go down to the pharmacy to pick up all of Manny's medications. So, I went and did that and figured that I would go check the car and make sure I didn't lock the keys in the car. Sure enough the keys were locked in the car and laying on the seat. I don't know how I did that.
Our friends Mike and Marion parents of Madison who are also Transplant parents helped me and Manny get to the Ronald McDonald House. On top of that they called their AAA and had my car opened. They are truely a blessing.
Having Manny home has been a journey all over again. I just have to get familiar with all 22 of his daily meds again. I'll get into my own schedule in no time. I hope. Today was a breeze, It was Manny's first day back to clinic. He only had to get one scheduled medication and we were out of there. I couldn't believe it. He didn't need any platelets, or blood, I was so amazed. I think the Lord has given us a break. On top of that, I don't have to take him to clinic everyday like I thought. We only have to go two days a week. Tuesday, and Friday. I'm still going to drop off labs every other day, just to be safe and make sure Manny stay on track.
Stephen, and the kids should be here in 3 1/2 hours. I'm am so excited to see them. And, I know they are so anxious to see Manny. It also means that I get a short break. Things are starting to look up!!!! Now I just have to pray that Manny continues to improve in the next 2 weeks so that he'll be released and we can go HOME!!!Please continue to pray for Manny and his recovery. Special prayer request for Manny. To please keep his platelets up, and that the stomach aches will soon stop. Thank you everyone for all of you love and support. I'll keep you posted on all of Manny's progress.
Melissa
Wednesday, August 13, 2003 12:56 AM CDT Post Transplant Day 104
I have great news!!!!!!!!! We get out of the PBMU this Thursday. I am so happy. I have been pleading with the Doctors to please release him. Last week we were told that Manny would be outpatient this past Monday. And then the Doctor on call switched, and when Monday morning came, he said next week. So I finally said it has to be this week. I asked them to really go over everything that Manny has been dealing with over the past few months, and re-evaluate him. They finally came in yesterday after going over everything and realized all of the improvements that Manny has made. So they said we can get out.
I am so excited. All though we still have some small bumps in the road, it looks like things are finally going in the right direction. Stephen and the kids come up on Friday, and I can't wait to see them. Talking to them on the phone is so hard. I wish that Manny and I could be there with them. SOON. That's what I have to keep telling myself.
We haven't gotten any of the results back from the 100 day studies that have been done. Hopefully this week. Manny gets his new wheels next week, in the mean time I'm going to use his jogging stroller. He fits in it perfect, and sits up by himself so good so I'm sure we'll be fine for the next couple of days.
Please continue to pray for Manny and his recovery!!! We need a mircle!!
Reminder to friends and family!!!!!!!
Don't forget about Manny's fundraiser Dinner on September 13th. All of the money raised is going to be used to buy Manny all of the equipment that he'll need. (bath chair, car seat etc.) and to pay off any medical expenses from his hospital stay. It's going to be lots of fun. Please contact my mom Rosa at (909)338-6759.
Melissa
Friday, August 8, 2003 7:45 PM CDT Just a reminder!!!
Manny's Fundraiser Dinner will be on September 13th, 2003 in Azusa, Ca. For tickets and more information please contact my mom Rosa at (909) 338-6549. There will be food, raffles, bands and more.
Hey everyone, Sorry it's been such a long time since I last updated the page. The computer that's usually hooked up in the parent lounge is not working due to the move from the 9th floor back to the 5th floor. And, since Stephen had to go back to work this past week, I can't leave Manny.
Manny is having an MRI done right now. They are starting all of his 100 day studies. So far he's had some blood work done to see if he still has his donor cells, an EKG for his heart, and an MRI for his brain. Manny has been doing very well. He's back on a regular sleep schedule which I am very greatful for. I was a little worried, Stephen and I alternated nights with Manny before he went back to work. And that was hard enough when Manny was awake all night. We barely rested when we stayed at the apartment. So, he's giving me a huge break.
He's been tolerating his feeds very well. His dosages are increasing everyday. We haven't had any problems. Little stomach aches here and there, but he's handled it all great.
The blood clots in his bladder have also cleared up. Manny hasn't urinated any clots for about a week now. So, he's a lot more comfortable, and isn't getting a lot of pain medication any more. He's a lot more alert now, and still continues to talk more, and more as the days go by.
Physical Therapy and Occupational Therapy comes in and works with him a couple times during the week, and he's getting a lot stronger. He's starting to build his strength back in his legs. He can stand for a few seconds and then needs to rest. He sits up by himself, and is still improving everyday. Stephen and I are so proud of all the progress that Manny is making.
We are still dealing with the issue of trying to communicate with him, but the nurses and Doctors have told Stephen and I that Manny definetly knows when we are there with him. We see it too. It's a little hard for the nurses to calm Manny down, but as soon as we come to him he seems to be just fine. He still always asked for his Daddy. He always wants Stephen. He holds Stephen close, and says " I just want you to lay with me dad". " He likes to yell my name when he goes to the bathroom." As long as he calls, I'm happy with that.
On Monday Manny was also re-fitted for a special chair just for him. He was fitted a few weeks ago by another company that the Physical therapist recomended, but I thought they took to long to get the equipment that Manny would need. So, I found another company that will provide the exact same chair with the same quality, and it will be here in 7 to 10 days. I was thrilled. That's all for now. I'm sure Manny's all done with his MRI. I'll keeped you posted.
Melissa
Sunday, July 27, 2003 8:01 PM CDT Post Transplant Day 87
Manny had a pretty good day. He hasn't had a lot of pain from the PEG that was placed. And, we haven't had any problems at all with the feeds that he's been getting. He's tolerating food again pretty good. He's even telling us that he's thirsty, and hungry. He's drinking out of a straw, and of course as always wants his drinks ice cold. Once a day he'll be getting more and more of the liquid food as he's able to tolerate it. We started out pretty slow, and seem to be building pretty fast. When the Doctor came in, he said if Manny was drinking that way last week the PEG probably wouldn't even have needed to be put in. So, they think that it will only be in for a short time. Which I am very greatful for.
Stephen stayed with Manny last night and said that it was a litlle rough. Manny still has his nights and days mixed up. He'll wake up at around 3:00 in the morning and then fall asleep at around 9 or 11:00. For the most part he's awake. It makes Stephen and I very nervous when we're tired and he's not. Because if we fall asleep there's a chance that when we wake up, somethings not going to be where it's suppose to be, meaning Manny still pulls at what ever he feels close to him. I don't know if he'll ever get used to things being on his body.
Other then that, we're looking forward to getting out of here. As, soon as they say "Manny is ready to go home, home" I'll be out the door before they can finish.
Mrs. Ballard(Manny's K-5 teacher) and her family are here from South Carolina, and are going to stop in to visit. We're so happy to see them, and I know that they've been looking forward to seeing Manny. Please continue to pray for Manny's recovery, and that he'll be home in his own room, and bed soon. We would also like to ask that you would pray and visit Manny's friends here at Duke that have also had Stem Cell Transplants. Their web-pages are below.
Melissa
P.S. Manny also has a new quilt that you can look at online. Please don't forget to visit.
http://quiltsoflove.com/quilt/mannyM/mannyM/html
www.caringbridge.org/hi/noah
www.caringbridge.org/nc/princessmadison
www.caringbridge.org/co/nolanramsey
www.caringbridge.org/ia/jeremiah
www.caringbridge.org/va/malcolm
www.caringbridge.org/mn/jesseb
The "Helping Hand Club of Azusa" is sponsoring a Dinner/Dance Benefit to help Manny and his Family.
The Benefit date and time:
Saturday, September 13th,2003
at St. Frances of Rome, Parish Hall
402 N. Dalton Ave, Azusa
Dinner: 3:00 - 6:00
Dance 6:00 -10:00
Adult Tickets $10.00 Child ticket $5.00
Pre-sale tickets can be purchased by contacting Manny's (Nana) Rosa Garcia at: 909 338-6549
Friday, July 25, 2003 10:25 PM CDT Post Transplant Day 85
Hey everyone,
Today went by pretty fast. Manny was taken down to Pre-OP at about 12:00 this afternoon, and was ready to go in and have his new PEG tube placed. Stephen and I were able to be by his side while they started the meds for him to go to sleep. He was so calm, and did great.
Stephen and I had about 1 hour to go grab a bite to eat, and be back on time for the Docs to come out and let us know how it all went. We were back just in time to go back and see Manny. He was sleeping, and was given lots of pain meds to keep him comfortable. They brought him back up to his room, and he's been pretty well rested. As long as he's not feeling any pain he seems to be fine. So, I'm making sure that he gets all his meds on time. I even made my own chart of Manny's meds, and started to check them off as he gets them to make sure.
I'm praying that I can sleep tonight, since lately it seems to be a luxury to sleep past 5:00 in the morning. Stephen called me, and sounded pretty tired. The kids are sleeping and I'm sure that he's thrilled.
The days are getting closer and closer to when we are all seperated again. Stephen and I are already telling each other how much were going to miss each other. He promised that he would be back every weekend to see Manny and me. We're trying to enjoy every minute with each other and the kids. It won't be long before were all at home together.
Please continue to pray for Manny and his recovery. He needs extra prayers for comfort, and rest. Thank you all for all of your great messages, and support.
Melissa
Thursday, July 24, 2003 9:47 PM CDT POST TRANSPLANT DAY 84
Hey everyone, sorry for not updating in a week but we've been extremely busy with Manny this past week.Let's see, he's thrown up on me and peed on me in the same day. He's pulled out his NG tube about 7 times and he's more alert and awake than a week ago. We're hoping he can be discharged in a week from today.
Tomorrow will be another big day for Manny because he will get a tube placed in his stomach coming to the surface of his skin so it can allow Manny to get his food. He can't swallow food right now and he won't keep that NG tube in for longer than a few hours so this is our only option if we want to feed him. At noon tomorrow he will get his new tube. It will only be in for as long as he can eat and swallow on his own again.
Manny's nino, uncle Tommy flew in from California last night to spend some time with him and to come to South Carolina with me and the kids when I go back to work in another week in a half. It really helps when we have family support around. We are blessed.
Please continue to pray for Manny for his little operation he will be going through and that maybe he could see our faces in his thoughts and dreams. Thank you for your support.
Stephen.
Friday, July 18, 2003 8:32 PM CDT Post transplant Day 78
I'm sorry that I haven't updated in a couple of days. This week has been hard to handle. As the days go bye you would think that things are getting easier because we are getting closer and closer to day 100. But, it seems that it's been just the opposite. Stephen and I have been finding ourselves struggling everyday watching Manny go through all that he has. It has been so painful to see the differences in Manny.
This week Manny has had visual, hearing, and an Upper GI test done to check for reflex. On July 11 he had the visual, and hearing test done. The results came back that Manny still had some hearing. As much as we try to communicate with him it doesn't seem to us that he is able to hear us trying to talk to him.
The hardest news was finding out that Manny can no longer see. The test showed that there were no brain waves response from his eyes. Finding this out was hard to deal with. We have been trying for weeks to communicate with Manny. He's been calling out when ever he's awake. "DAD?", "MOM?". "WHERE ARE YOU?", "I MISS YOU". We've been hugging him, kissing him, holding him, rubbing his hands against our faces. Trying to show him that we've been here everyday by his side. It hurts so badly to hear him cry out. It's been so frustrating at times, but we haven't given up. We keep trying. It's all we can do.
The Upper GI test was done to see if Manny had reflex. The test came back that he doesn't and that everything is fine. Since we are getting closer to day 100 and Manny is still inpatient, I asked the Doctor today if it looked like we would be going home, home on schedule. Of course the response that I got wasn't exactly what I wanted to hear. It doesn't look like we will be going home until early September.
Since Manny's infection in his small intestines was so severe it's taken all this time for him to recover. So, he's been getting platelets daily, and blood transfusions at least once a week. As soon as he can start holding on to it better, he can't go home because it's too much of a risk. We know that we need to do what's best for Manny, so if that means another month, then that's what we have to do.
Manny has suffered, and gone through so much in so little time, and we ask that you will please continue to pray for his recovery, comfort and peace. Please pray that when he sleeps he sees our faces in his dreams, and that he knows that we are always with him.
Melissa
P.S. there are some new pictures that we have posted of Manny and family. The pictures are not recent, but were taken when Manny was inpatient the first time.
Saturday, July 12, 2003 10:21 PM CDT Today has been a pretty stressful day. Manny is so uncomfortable and wants to get out of the hospital bed so badly. He always turns to his right side with his arms up in the air for us to grab him and make a run for it. I wish I could. He's still pulling at everything that he can get a hold of. Now he pulled out his right central line, and it's probably going to have to be put back in tomorrow.
Watching him go through this has completely ripped us apart inside. It's changed our lives forever. All of our dreams for him feel like they've been taken away with one phone call from the doctor. "He has Adrenoleukodystrophy", and there is "No Cure, and "No treatment". God gave us the strength to get on the phone, and try to do whatever it was we were suppose to, to find help. And we did. But, I don't think anything or anyone could of prepared us for what was about to happen.
I hope I'm not sounding as if we don't have faith that Manny is going to pull through this because we do. That is what keeps us going everyday. We pray and hope that we are going to see him riding his bike, and playing with Samantha, and Stevie. Hear him running down the stairs from his room, and drive him to school again.
So many families here are going through the same thing that we are. We are all here for one reason. That our kids make it here just to get help, and once they get it that they make it through all of the treatments that completely destroy the inside of their bodies. I was reading another families web page and what they said is so true. When we bump into each other around the hospital or at clinic and get updates on the kids we always ask. How is he/she doing today?, "Good" when a transplant parent says "Good", we know what "Good" means. It means, well, their throwing up 20 times a day, but it's just meds or mucous, not blood, or, they've completely stopped eating and drinking, but they're still walking. Or, they haven't needed a blood transfusion in a week, but still aren't growing their own platelets. Basically they're surviving, and at this moment they made it through another day. What is normal? Who knows, it's something that we once knew in our former life.
Manny means the world to us and we pray everyday that he will get better, and that this disease will stop taking away all of the special things that makes him "Manny". Please continue to keep our family in your prayers, thank you.
Friday, July 11, 2003 12:04 AM CDT This week has gone by so fast that half of the time we don't even know what day of the week it is. Manny is doing pretty good considering that he's pulled out his NG tube a total of 3 times, and worst of all pulled his central lines right out.
He pulled out the double lumen which was on his left side. He only had a single lumen left on his right side, and that just wasn't going to cut it. Manny is still getting a lot of anitbiotics and tons of other meds around the clock that he needed the lines put back in. On Wednesday afternoon Manny went back into the OR(operating Room)to have his lines replaced. Everything went really good, and he's now back on schedule.
They also tried to start feeding him again this week. Manny hasn't had anything to drink or eat since June 7. So it's been over a month. He didn't do so well, but we were told that after a few days of trying his stomach will start to tolerate it better.
Physical therapy came in yesterday and worked with Manny. He is doing so good. He's holding his head up without support and is supporting his body with his arms. So in a couple of weeks were hoping that he'll be able to start sitting up without support. He's still really sore though, so it might be a little longer than what I would like. All he needs is time.
Samantha and Stevie also came back yesterday from being on vacation with Grandpa and Grandma(Frank and Cecilia). They were in California having a blast. Samantha came in the room to see Manny. She climbed on the bed and was holding his hand and giving him kisses. She told Manny that she loved him, and less then 5 seconds later Manny turned to her and said "I love you too". Samantha was so happy that Manny talked to her. We were so thrilled to hear him communicating with her. I know that they miss each other so much.
Please continue to pray for Manny and our family.
Meliss and Stephen
Monday, July 7, 2003 5:40 PM CDT Day 67
Today was the BIG move day. The whole Pediatric Bone Marrow Unit was moved to the 9th floor. They are suppose to start renovating starting tomorrow. So, one by one all of the kids were taken in there beds up stairs. The rooms up there are very different and small. But, thank God that Manny will only be inpatient for another week and a half before we bust out of there.
He is still suprising us everyday. Talking more, and trying to roll to his side. He keeps falling asleep with both of his hands behind his head. His WBC, Platelets, and Vital signs are all great. Manny hasn't had GCSF(meds to help boost WBC cells) in almost a 3 1/2 weeks now. He growing them all on his own, and is holding on to them.
Physical Therapy came in today and worked with him for about a half and hour. Manny's holding his back, and neck up on his own. She said that he's made great improvements since last week. Dr. K said that Manny will recover from being on the ventilator, and will start to regain strength soon. So he won't be stuck in his bed forever. The 3 weeks that he was in PICU on the ventilator, sedated was hard on Manny's bones, muscles, and being that he already has problems within his brain affected him a lot.
Manny shows us everyday that he's trying his hardest to get better. He is so strong, and brave. He's come so far. We're still on track to go home at our 100 days. As long as Manny doesn't have anymore set backs everything should be on schedule. Only 33 more days to go. We pray everyday that we'll be home soon.
Thank you for all of your prayers, and please pray for Manny and his friends here at Duke that have also gone through Stem Cell Transplant. Jeremiah, Princess Madison, Baby Nolan, Baby Noah, Alex, and Malcolm and all of the rest who are here fighting to get better.
P.S. Stephen and I are having a great Anniversary. We were able to take a walk OUTSIDE, and hopefully if all goes well we'll be going out to dinner.
Melissa and Stephen
Sunday, July 6, 2003 4:55 PM CDT Hey everyone, Manny just fell asleep so this will probably be the only time to update. I say that because these past few days he's been more aware, when Stephen and I are around. He gets pretty upset when we don't come right away. He always turns to his right side, and holds his arms up for us to come. As soon as he feels us he calms down, and will close his eyes.
He's finally off of the blood pressure medication that he's been on for the past month. That was a good thing, because it means that his BP is stable and the IV on his hand could come out. He's been on about 17 different medications so he needed more then just his central lines to do the job. So, now he just has his central lines again.
Yesterday we got him out of bed and let him ride in one of the wagon's here in the unit. It was his first time out of a bed in 4 weeks. Stephen pushed his pole with his meds, and I pulled him. We were walking up and down the hall over and over again. Stephen and I kept looking at each other with huge smiles on our faces. Seeing Manny in the wagon was great. He's come so far. Watching him with no breathing tube, with his eyes open just enjoying the ride felt so good. We feel so greatful for the things that we are given everyday. The smallest changes are huge improvements. And that is what's keeping us going everyday.
Tomorrow, Stephen and I are celebrating our wedding anniversary. Not sure what we are going to do yet. Probably just order some real food, and hang out with Manny. Sitters are hard to come by out here. We're very happy though. We are closer then we've ever been throughout our whole marriage. Going through this experience has made us look at ourselves in a different way. We took advantage of so many things in our everyday life. Our kids and family mean the world to us. And we charish every min. that we have together. God hears our prayers and has gotten us this far.
We've had another great day together. We ask everyone to continue to pray for Manny, and our family. Love to you all, and God Bless.
Melissa
Thursday, July 3, 2003 2:36 PM CDT Hey everyone sorry we haven't updated in a couple of days, but Manny finally started sleeping. So you know what that means. Stephen and I started sleeping. We've been trying to get as much rest as possible.
Manny is doing really good, considering what he's been through this past month. We thank God everyday for giving Manny the strength to get off of the ventilator, and getting out of the PICU. Slowly he's still being weaned off of medications. He's off of all pain, and sedations meds. Now we're just trying to get him off of blood pressure stuff. Our short term goals is for Manny to be off of one of the BP medications, and to continue to hold on to his platelets.
We were told that if Manny can do that there's really no reason that we have to be inpatient. But, there's no rush. We feel a lot safer with Manny being here, because he has around the clock Doctor care, and if we have any questions or concerns there's always someone that's down the hall.
With him being off of all the medictaions in a couple of days, or weeks he'll start to be more alert and will hopefully be on a regular sleep schedule. He's still trying to talk, but his throat is still very sore.
Physical therapy has been coming in 3 to 4 times a week to work with Manny. He doesn't like to be messed with a lot, but he's getting used to it. He's getting stronger though because today he tried to do some on his own. Stephen and I sit him up and move him as much as we can. We just have to give him some time, and we know that he'll come around.
Please continue to pray for Manny and his speedy recovery. We can't wait to get him home again.
Melissa and Stephen
Sunday, June 29, 2003 10:21 AM CDT Unfortunately it was another rough night for Manny, and Daddy. He hasn't closed his eyes or slept now for 3 days. Stephen gave me a huge gift last night, He let me sleep. He made himself some extra strong coffee so he could stay up with him. He stayed up with him until 8 in the morning! The good news is that he's been a lot calmer. Not trying to grab everything in reach. We've been moving his legs and arms so that he's still moving his muscles. We don't want him to have a really hard time walking when he's ready to get out of bed.
The Chief Neurologist as well as the team here in the Bone Marrow unit came in this morning to examine him and made some really good changes. They said that just over night Manny has made a lot of progress. He's responding a little better. They weaned Manny and cut the dosages in half from almost all of the pain and sedation medication that he was given. Slowly in the next few days the meds should be getting out of his system, and he'll start to come around more. He's still starting to talk more and more. His throat is still very sore from the ventilator tube being down there, but the swelling has gone down a little.
We are also so happy to tell everyone that the results from yesterdays MRI came back, and shows that there is no change at all in Manny's brain. And they don't see any more break down of myelin. It was compared with the MRI that was done here at Duke in April. That put the biggest smile on our faces. So now we know that it's most likely all of the meds from steroids, to chemo, and pain meds, and of course being sedated for 3 weeks that's affecting Manny.
We've been praying over Manny everynight for his recovery and just to see a little bit of the Manny that we know and love. He's coming around slowly, but all he needs is time. And we have that to give to him. His body has been turned inside out, but he's a fighter, and is so strong. Please continue to pray for Manny. For his rest, and speedy recovery.
Melissa and Stephen
Saturday, June 28, 2003 1:07 PM CDT I wish I could say that Manny had an easy night. He is fighting so hard to get better, and is trying to talk more and more everyday. The narcotic medication that he was given to keep him sedated while he was on the vent has really hit him hard. He still hasn't slept since he was extabated Thursday morning. His heart rate is up along with his breathing, and blood pressure. His body is working so hard, and isn't handling the withdrawls from the meds very well.
Stephen and I were up all night right along with him. Taking turns as much as we can to catch a little sleep. On top of being tired, watching Manny go through this and feeling completely helpless is just ripping us apart inside. He's been calling out our names "MOM", "DAD", Mom" "DAD" over and over again. We've been hugging him, and rubbing his face, and head, trying to let him to know that we're there with him and haven't left his side for a minuete. His hearing is horrible, and were still not sure about his vision. We think it's pretty bad though because he's not making contact with us. It's as though he doesn't know were in the room.
It's so much harder then I thought it would be with him being off of the vent and awake. When he calms down, which isn't a lot he seems to be okay. Still awake, never closing his eyes though. But, he's usually grabbing at everything that he has hooked up to him. Where ever his hands land he pulls no matter what it is. As if everything hasn't been bad enough, Manny pulled his NG tube out. It was draining so good too, getting all the junk out of his stomach. His nurse came in to put a new one in, and I just couldn't be in the room to watch him go through any more. Stephen stood by his side and held his hand. Thank God that they got it in on the first try.
Being that he has ALD, and not knowing if it's slowed down or stopped progressing yet we asked the doctors today when they came in if they would order an MRI of his brain to be done again. They usually only do one closer to 100 days, but we can't wait anymore to find out what's going on inside his head. The doctors agreed, and also ordered a spinal tap to see how much pressure is surrounding the brain, and to rule out a viral infection that can be deep inside the brain.
We stayed up all night praying and begging God for him to comfort Manny. To just heel him and restore all that Manny has lost, and to let him know that he is safe and that we haven't left him. For him to feel that we are close. Manny told everyone about the Lord and even though he's only six he was so proud to spread the word to friends at school. He has such a warm soul, and is such a wonderful child that I pray God will spare him from all that he is going through. Please pray for Manny, and his recovery. We love him so much, and won't stop fighting for him to get better.
Melissa and Stephen
Friday, June 27, 2003 6:04 PM CDT Well we are so happy to announce that Manny is doing great today, and we are now located back in the Bone Marrow Unit once again. Manny will be there hopefully only a few weeks to recover from all he has been through in the PICU.
It's great to be back, and it's inspirational on how much progress Manny has made over the past 3 weeks in the PICU. At one time we really didn't think he had a great chance to make it through one of his nights there in the PICU Unit.
Manny still hasn't had a night where he's been able to rest and sleep. So it's been pretty exhausting for Melissa and I, and of course for Manny. He has just been really aggitated and he's finally starting to calm down now with some new drugs they have him on. Manny has now built a huge tolerance for the sedation drugs that were given to him. So high that if I (dad) had taken them, I'd pass out! So they are starting to wean his sedation medications, and it's just going to take a little time till' we get our Manny back, but he will be back!
We are so blessed and thankful to GOD for his mercy on us. We thank everybody for their prayers for Manny, they really worked. Please continue to keep him in your prayers for his recovery please.
Stephen and Melissa
Thursday, June 26, 2003 6:52 PM CDT I have really good news to give to you all. As we told you in our message earlier Manny was extabated this morning. He is doing better then we expected. He is breathing on his own with little oxygen support. His oxygen levels have been steady in the high 90's to 100 percent which is wonderful.
The sedation medication hasn't completely worn off so he's still a little out of it. Manny was trying so hard to say something, and finally it came out. He said "Dad". Stephen had a huge smile on his face. After a while he spoke a little more, and said "mom', and "I have to go pee". That's our Manny!! He's making great progress.
His heart rate was a little high, so I asked the nurse if I could hold him to help comfort him. So for about an hour I held Manny tightly in my arms. If was the best feeling ever. I've missed being able to hug him close to me. it's been 3 whole weeks. He settled down a lot. The nurse said that while I was holding him that's the lowest his heart rate has been all day. He hasn't slept though, so were hoping he tries to rest his little body. He's had such a big day.
His doctor came in about 45 min. ago and said that she thought Manny was doing great and she didn't have any concerns. If he does good throughout the night, sometime tomorrow he'll be able to go back to the Bone Marrow Unit. We will be soooo happy to be back there. We would rather be at the apartment with him, but right now that's just as good.
Thank you all for your wonderful messages. They get Stephen and I through some very rough times. It feels great to know that so many of you love Manny so much. Please continue to pray for Manny to get through tonight, and that he will continue to improve daily.
Melissa and Stephen
Thursday, June 26, 2003 8:41 AM CDT Well this morning Stephen and I are pretty ticked off by the staff in the PICU. We left the hospital last night around midnight being told that Manny would not be extabated until 10:30- 11:00 today. We have a huge sign in Manny's room that's idiot proof for everyone to read, that if there are any changes in Manny's status at any time to call us so that we can be there with him.
As we were about to leave I called to find out how Manny did during the night. The secretary said that the nurse wanted us to call back in ten min. So you know me, as soon as ten min. came I was on the phone. Well it turned out that Manny was extabated. No one called us there was absolutely no communication what so ever. Apparently Manny had been waking up since 6:00 this morning. Did any one call. NO The nurse said no one told her to call us. I asked her did you see the sign on the wall that stated our instructions? HELLLLOOOOOOOO
The reason that the PICU has such a bad name is because half of the nurses in there are useless. The staff at the front desk are rude, and heartless. I can't wait until Manny is out of there because that whole unit isolates parents that want to be there with their kids. They have no compassion what so ever. Parents are always having to report half of the staff. Please pray that your children are never in a situation that they have to be in the care of the staff in the PICU at Duke. Okay now that I got all that out.
Manny from what we've been told is doing good. He's wide awake. There idea of good and ours are 2 different things. So we'll give you another update later today. Family if you need to get a hold of Stephen or I. Please feel free to call us at the PICU. The number is 919-681-5541, room 5610. They are not allowed to give out any information over the phone to anyone so they'll tell you that you have to talk to us.
Please pray for Manny. We're not sure if he can hear or see us so we know that he's pretty scared.
Melissa and Stephen
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Wednesday, June 25, 2003 3:26 PM CDT Hey everyone, today Manny is doing good. He is very comfortable and is on 25 percent oxygen, and his peep is at 5. That was our goal. So, we're praying that tomorrow is the big day for him, and that the tube comes out. We can't wait to see him wake up, and see us. We are so excited. We are on our way back to the hospital so I'll update more tonight if there are any changes.
Please continue to pray for his recovery. There is also a very special family that we have gotten to know, that we would like you to pray for. A friend on the Bone Marrow unit (Hermes)has passed away today. Please pray for his parents, and his family.
Melissa and Stephen
Monday, June 23, 2003 0:05 AM CDT Entry 31 Post Transplant Day 52
Today was another step of progress for our Lil' Manny. He has been pretty stable the last few days and we are hoping that his ventilator tube will be taken out the middle of this coming week. Like we said before his peep setting on the ventilator is 8 but they will start weaning that down starting tomorrow. They started to wean his sedation medication today so when it's time to extibate (take his tube out)him he will be awake so he can breathe on his own.
Me and Melissa are just taking it one day at a time. We are anxious to hear Manny's voice but on the other hand we want him to be ready and strong enough to breathe on his own. We know he can do it but we just need to be patient.
Since Manny has been in the PICU unit Me and Melissa want to be there with him in case anything goes wrong, so my Mom (Grandma Cecilia) and Dad (Grandpa Frank) have been kind enough to take our two other little rascals Samantha and Lil' Stevie to Ohio for a week until Manny is discharged back to the Bone Marrow Unit.
Not much has been changing these last few days but some crucial days are ahead of us so we will continue to update everyone. Thank you for your consistent prayers and love, please keep us in your prayers as we head into another important week in Manny's life.
Stephen and Melissa
Thursday, June 19, 2003 7:52 PM CDT Entry 30 Post Transplant Day 49
Hey everyone sorry for not updating Manny's page in a couple of days. But, we've been with Manny at the hosp. and stay until about mignight. And when we get home were completely exhausted and just fall asleep and get ready for the next day.
The last couple of days Manny has been making slow progress. His chest x-rays are showing some improvements. They're starting to clear up, and there isn't any more fluid in them. His right upper lobe in his lungs is still partially collapsed. So, the settings on the ventilator are giving him a little extra pressure expanding it which is called his peep. The pressure they started him on was 10, but as Manny starts improving every 12 to 24 hours the settings will go down one. He's now at 7. The goal is to get down to 5, and if he stays stable he can be taken off of the ventilator. So, were hoping it keeps going down.
His stools have slowed down a lot. We're only having to change him about 3 to 4 times a day, where as a couple of days ago it was like 7 to 8 times a day. We were pretty worried when he started to pass blood clots in his stools. His Dr. said that she was not suprised at all to see that, being that Manny had a lot of infection in his intestines. She also said that most likely Manny has a moderate amount of Graft Versus Host Disease which is when the new cells attack Manny's body. There is medication to help prevent GVHD from causing too much trouble to Manny. The meds have already showed improvements.
Manny's also on a continuous platelet drip to help stop the bleeding. Platelets are what help clot the blood. He's also gotten 3 blood transfusions over the last couple of days because his hemoglobin has been anywhere from 6 to 10. So, they just want to keep up with what he's losing.
His blood pressue, heart rate and temperature have been a little high since tuesday, but it's because of all the sedation medication that he's on. They've been having to change and higher the dosages, because Manny's body is starting to have a high tolerance so he needs more. We're hoping that he'll be getting weaned off soon, so that he can wake up. We really miss his voice and the smile on his face. I'll give you all an update tomorrow, we promise. Thank you again for all of your messages and, please pray for Manny's speedy recovery.
Melissa and Stephen
Saturday, June 14, 2003 5:23 PM CDT This morning around 7:00 Manny's left lung partially collasped. The nurses have been moving him from side to side trying to get his lungs to expand better. While he was on his left side the pressure was just too much, and Manny's lungs and body are just so sensitive that they thought it would be better to put on on a special bed that rotates him, and vibrates to get his blood flowing, and losens up the mucous in his lungs.
This did set him back. We were told that they didn't feel Manny's lungs were strong enough to take him off of the venitlator, so he'll probably be in the PICU for another week. If he shows a big improvement in the next couple of days it could be sooner. At this point he's still at a very critical stage. His body is so tired, but trying to heal itself from the infections that he has everyday.
All of us are there everyday switching off to be able to be with Manny. Holding his hands, and rubbing his legs. Letting him know that we're there, and haven't left his side.
We pray that everyday when the doctors come in they have good news for us. His primary Doctor who has been with us since the begnning came in today and said that she feels confident that Manny will be improving more and more everyday. Though his progress may go up and down. His improvement will be slow.
Thank you for all of your prayers and encouraging messages. Please keep him it your thoughts.
Thursday, June 12, 2003 8:07 PM CDT Today has been a great day for Manny. He has made huge improvements, and is starting to take strong breaths, breathing over what the ventilator is supporting him with.
Since yesterday Manny has been passing a lot more stools. Which is great. He also passed what they think might have been causing alot of the obstuction in his small intestines. The x-rays that were taken this morning showed a lot of improvements, and is showing that a lot of the air pockets are starting to move more and more towards his colon. Though there is still infection, he is stable and making significant progress everyday. All of his vital signs, and oxygen levels for the past 24 hours have been normal. He's very comfortable, and is resting very well. He needed it after the past two weeks of no sleep and pain.
We're hoping that in the next couple of days Manny will continue to do well and he will be off of the ventilator. They'll still continue to keep a close eye on him, and won't release him back to the Bone Marrow Unit until they're absolutely sure he can breath strongly on his own.
We all love Manny so much, and we know you do too. Please continue to pray for his recovery and that he is able to come home soon. I'm sure we'll have more good news to give you tomorrow.
Melissa and Stephen
Wednesday, June 11, 2003 9:00 AM CDT I have good news for everyone. Manny has made a lot of improvement over the last day or so. He is very comfortable and isn't feeling any pain in his stomach. The chest tube was put in and has drained most of the fluid in and around his lungs, and is still continuing to drain.
His blood pressure, and heart rate are all stable. They were pretty high before so it's improved a lot. They've also lowered the setting on the ventilator trying to wean Manny off so that he'll be able to breath without support.
He has a foley catheter and it has drained so much urine, which has helped because it's taken some of the pressure off of his stomach. His stomach has gone down 3 1/2cm and the x-ray of his small intestines are slowly improving showing that the air pockets are moving towards his colon.
His doctors suspect Manny has bacteria in his intestines and lungs, and that it's not a viral infection. If it's a bacteria it's treatable with antibiotics, if it's viral there's not many medications to help. So were praying that it's a bacteria so that it can be treated. Manny is stable and slowly improving all the time. He's a fighter and is hanging in there.
My mom Nana Rosa and Rick, and my little sister Roni are all here for support as well as Stephen's parents Grandpa Frank, and Grandma Cecilia.
Manny squeezed his daddy's hand and his grandma Cecilia's yesterday, so I'm hoping to get a little squeeze from him today. We're all praying so hard for Manny's recovery, and I know all of you are too. I will keep you all posted and let you know all of Manny's new improvements.
Melissa
Monday, June 9, 2003 6:44 PM CDT Hey everyone as I mentioned in my last journal message Manny was re-admitted into the PBMU. This morning he took a turn for the worst. Manny is now in the Pediatric Intensive Care unit.
This morning around 4:00 he started having a lot of trouble breathing on his own. He was taking very shallow breaths if even that and started weezing along with that. They called respiratory in right away to try to help bring his oxygen levels back up so that he's breathing right. The doctor informed me that there was a good chance that Manny would be intubated, which means they would put the breathing tube in his airway to give him oxygen. In the mean time they started bypap which is basically a mask of oxygen on his face.
They did an X-ray of his chest before he was transfered, not expecting anything was wrong because we thought he was having beathing problems because of the pressure from his stomach. It turned out that Manny's right lung collasped and they immediately itubated him, and is getting support from a ventilator because he's not strong enough to breath on his own. The x-ray also showed that his lung was filled half way with fluid.
They talked to Stephen and I about putting a chest tube in to drain the fluid from his lungs. It was a very hard decision for us to make because his platelet count was very low, and there would be a chance that after it would be put in he could bleed internally from the surgery. The Surgeons felt confident enough that Manny would pull through and that the incision would clot nicely. And it did.
Manny is stable and fully sedated with medication to keep him comfortable from pain. The next 48 hours are crucial for him and he will be watched around the clock. Stephen's parents are driving in from Ohio today and should be here tonight, and my mom and Rick are flying in from California tomorrow to be by Manny's side. We ask that you would please pray for Manny and his recovery.
Melissa and Stephen
Saturday, June 7, 2003 6:28 PM CDT Thank god that we were finally able to get our computer. Rhonda and Paul Motsinger our neighbors and good friends traveled to Duke today to visit. It felt really good to see them. Thanks again for coming and bringing everything.
Last night at about 2:30 in the morning Manny was taken to Duke hospital to be looked at because of severe stomach pain. He has been readmitted into the Pediatric Bone Marrow Unit. Manny has had it pretty rough the last couple of weeks. Last Saturday Manny started to develope a bacteria in his urine called Polyoma. It's basically a bacteria in the bladder that causes him to urinate blood. It's been very painful for him. He's had Bladder cramping, and burming when he has to go to the bathroom. It's caused him to lose his appetite which has really made Stephen and I worry because if he's not eating and getting the nutrition that he need's. We really stressed to the Doctors that we wanted Manny to be back on TPN which is fluids with nutrition. That will help and hopefully so that Manny won't get to weak. They started that this past Wednesday. However we were informed this morning after a CT scan and a couple of X-rays that the pain that Manny has been having in his stomach is caused by obsrtuction of his bowls in his Small Intestines. The muscles are not allowing him to pass food through. His stomach is very hard and has grown to be about 3 times it's normal size. His doctor's are still not sure the cause, but are taking every precaution to make sure the infection does not spread, and that he gets the medication he needs to clear this up. They placed an NGtube which goes through his nose and into his stomach to drain some of the fluids that are building up. It is so painful to watch him go through this, but we know that we need to be strong, and keep praying that this is just a small bump in the road to recovery.
I haven't mentioned some good news that Manny is 100 percent donor cells.
Please keep in him your prayers.
Melissa and Stephen
Tuesday, June 3, 2003 10:15 PM CDT Hi everyone,this is Manny's Nana Rosa updating the page for Steve and Melissa. They still don't have access to a computer to update Manny's page.
Manny's had somewhat of a difficult weekend. He had a lot of difficulty with his urine and stomach aches since Saturday. He urinates every 15 to 20 minutes and a times there has been distinctive traces of blood or blood clots.
You can imagine Melissa and Steve have been pretty exhausted with Manny waking up so frequently thoughout the last two nights.
Melissa and Steve found out yesterday that the blood in Manny's urine is due to a bacteria in one of his lines. Initially they were just flushing his lines but, yesterday they started Manny on antibiotics. Manny has been receiving platelets and his cells continue to go up,then down.
Melissa has been very concerned that Manny has not been interacting with his siblings and he has had a loss of appetite. He has also been sleeping a lot.
Steve literally spent all day Monday at clinic, from morning until after 8:00 at night. Steve was pushing to get Manny back on IV feedings to ensure he has energy and does not dehydrate.
Melissa was very upset yesterday as was I after speaking with her. It is so difficult to see Manny go through so much discomfort. I wish I could be there to give him and Melissa kisses/hugs.
Melissa did speak with Dr. Kurtberg at clinic today and seemed somewhat in better spirits after discussing her concerns regarding Manny's current condition.
Thank you Rhonda for sending me the article regarding Manny on the Greer Citizen. I was truly overwhelmed with emotion in reading his Kindergarten class graduation was dedicated to him. I know Melissa was so looking forward to attend that event with Manny and instead she is faced with an experience, I wish no mother or child should have to ever endure.
Please continue to pray for God to give Manny the strength to overcome these difficult days and to provide us with a miracle of healing.
Also, pray for Stephen and Melissa, that God grant them patience,wisdom and energy to deal with Manny's daily care.
Thank You
Saturday, May 24, 2003 11:16 PM CDT Hey everyone long time since I've been able to update Manny's page. I'm back in the Pediatric Bone Marrow Unit tonight. Manny didn't feel so good today, and was vomiting a little, and was complaining of stomach pain. We called his Doctor to find out what we could give him for pain and they decided that Manny needed to be checked out. So, we brought him in at around 10:00 tonight. They gave him some meds for the pain in his stomach and drew his labs to make sure that everything was okay. The results finally came back and it turns out that Manny will need to get platelets. Platelets are what help our blood clot. They're also going to run another test for his pancreas to make sure that everything is okay and to rule out that the pain is coming from there. Those results are still not back. So I'm hoping that comes back normal and that we'll be able to go home tonight. Other then that, since Manny's been discharged we we're able to go to our apartment here in Durham. Not home home in SC. He's still doing good. On day 30 which is in 6 days a DNA test will be done to find out which WBC's are growing. We're praying that it's the donor's cells, so that the ALD is stopped.
We're so happy to be out of the Unit, but it's a lot of work. Manny still needs around the clock care. Stephen and I give his meds mostly through his central lines, but he still has about 6 different meds orally. We switch off daily on bringing him in to clinic. There his blood labs are checked to see if he needs blood or platelets. And, he also get a few more medications while we're there. Manny's going through a lot, and we ask that you will continue to pray for his recovery. We're bringing our computer from home so we'll be updating all the time.
Melissa and Stephen
Wednesday, May 21, 2003 10:19 AM CDT Well everyone's prayers really paid off. We're being discharged from the hospital this afternoon @ around 1:00. Yesterday Manny's WBC dropped from 4.6 down to 3.0 which is a normal process. But today it's back up to 3.7. The Doctor's are really confident and comfortable about his discharge. When we get to our apartment we won't have a computer so we will not be able to update as much, so Melissa and I would like to thank everybody that has had a huge help in Manny's well being. We would like to thank GOD in which none of he's well being would be possible. Now the hard part begins, Manny will have to attend clinic everyday for the next 3 weeks and me and Melissa will be responsible for making sure he gets all his meds at home. We will be his nurses for the next few months. So if you will, continue to keep us all in your prayers that GOD will give me and Melissa wisdom, and strength for little Manny to keep growing cells. We love you all and thank you. GOD BLESS!!!
Monday, May 19, 2003 6:59 PM CDT Today Manny's WBC's are at 4.6. They've jumped a lot from yesterday at 3.0. Manny has had a good day. He slept most of the day, and hung out with Nana but once he was up he had tons of energy. He was so talkative as always and hungry. He wasn't really feeling the hospital food, so Daddy ran out and got him some McDdonalds, Manny's favorite. He was going to be discharged tomorrow, but it was changed to Wednesday. Not because of any complications with Manny but because the Doctors haven't fully submitted everything for discharge, and wanted to make sure that Stephen and I were trained with everything that Manny's going to need at home.
So were praying for Wednesday and that Manny continues to stay strong, and healthy. Thank you for all your prayers, and support. We love and miss everyone.
Melissa and Stephen
Sunday, May 18, 2003 4:58 PM CDT Hey everyone, it's been a couple of days since I've been able to update. So, I'll try my best to give all the updates that I have. As my mom told you guys Manny is still doing great. His WBC's are growing daily. We are on day 17 and Manny is at 3.0. He's having minimal discomfort, and is starting to take most of his meds by mouth. They've discontinued his pain medication and he's taking Tylenol for discomfort. He's doing so good that he'll probably be discharged from the Pediatric Bone Marrow Unit on Tuesday, May 20th. We are so happy. We still won't be able to go home to South carolina until his 100 days. So were praying that Manny's progress continues to go smoothly and that we'll be home in August.
The last couple of days Stephen and I have been learning how to draw Manny's blood from his central line, and how to change his dressing. We'll need to know how to do all of that at our home here in North Carolina. He'll have his blood drawn every morning and have to go to clinic to be given blood or platelets. It's alot to handle, but I know that we'll be able to do it.
Last but not least Manny had some very special visitors on Saturday. Grandpa Frank, Grandma Cecilia, Danny, Judy, Alex, Kenny and Gabes were all able to visit. Manny was so happy to see them and was so suprised. Uncle Danny just graduated from the U.S Marines and gave Manny a very special gift. He gave him his pin that he was given at Graduation. Manny loved it, and slept with it in his hand all night. Thank you Danny. We're so happy and proud that you made it through. Manny loves you. Please continue to pray for Manny's health and recovery. We love and miss everyone.
Melissa and Stephen
Friday, May 16, 2003 10:21 AM CDT Sorry it has been a while since Melissa has had the opportunity to give an update. It has been pretty chaotic in the last week having Samantha and Stevie back. We have all been switching off taking care of Manny and the kids.
So today I (Nana) am providing the update.
Manny was so excited on Monday knowing he was going to celebrate his Mom's birthday on May 13th.
Since Saturday, he has been struggling through some uncomfortable nights. Growing those cells is not easy on his body but some how his spirit would be lifted looking forward to celebrate his mom's birthday.
He surprised his mom with a card he designed about three little bugs and with a little help from Nana it looked great.
Manny has been making steady progress this week growing cells daily. He is now at 2.2 as of this morning.
Please continue your prayers as we know how strong the powere of prayer can be. We Thank everyone for their support and concern.
We are so happy that Manny's cells continue to grow cells grow.
Rosa Garcia ( Nana)
Monday, May 12, 2003 7:31 PM CDT Well Manny had another good day. This morning we got the news that his WBC's are at 0.6 and he's engrafting. The Doctor's made their rounds today and confirmed it by the signs that Manny's body is showing. One being redness in his hands and feet, and on his face. He's had little discomfort today, and is still getting pain meds to help.
His school teacher here in Durham says that Manny is showing a lot of improvement in some of his fine motor skills that he was starting to lose. He was getting a little discouraged and wasn't wanting to write, draw, or color. But he's starting to build his confidence back and made his brother and sister a card. He's doing great, and we're praying that he keeps it up. Thank you for all of your prayers. We know that prayer is powerful, and that the Lord is hearing us.
Melissa and Stephen
Sunday, May 11, 2003 9:33 AM CDT Well Last night Manny had it pretty rough. He was having pain throughout his whole body. He was crying and complaining of ear aches,stomach pains, everything that you can possibly think of. My mom (Nana Rosa) stayed with him last night, and did her best to love and comfort him. Finally at about 7:00 this morning he fell asleep, and is still sleeping now.
She called me early this morning to give me the best Mother's Day gift ever. Manny's new cells are starting to grow. They are at 0.3. Today is day +10 and we are so excited that they're growing so early. We were told that he wouldn't start growing new cells until about day +20. So, we are praying that his cells GROW, GROW, GROW so that he'll have a fast recovery, and that his disease is halted. These next few weeks are probably going to be the hardest for him because as the cells start to grow and he's building a new immune system, he feels weaker. He's still showing how strong he is, and we couldn't be more proud. Please pray for his recovery. And that his cells GROW.
Melissa and Stephen
Happy Mother's Day!!!!!!!
Saturday, May 10, 2003 9:40 PM CDT Hey everyone sorry I haven't been able to update these past few days. Things have been a little busy for us, and we haven't been able to get to a computer. Between Manny, Samantha, and Stevie together again, they give us all a work out. We're not all able to be in Manny's room at the same time. so, we're in and out all day.
Yesterday, my mom, me and the kids drove back home to South Carolina to check on the house and get our mail, We were able to visit with some close friends Paul, Rhonda, Katlyn, and Clayton for a while, they've been watching over our house for us while we've been gone. We packed up and headed back to Duke this afternoon. Stephen stayed with Manny and gave us updates all day. Since yesterday Manny hasn't been doing so well, but his spirits are high. He's been having some pretty bad headaches, and stomach pains. They've been giving him pain meds, so that he's comfortable. He's handling it very well. He's very tired, and sleeps on and off all throughout the day. His face is starting to get chubby because of the steroids that he's on. Everything that Manny is experiencing is normal. It's side affects from the Chemo, and has a lot to do with him not having an immune system. Manny's doctor's have told us that everything is going as planned. We're praying that he starts feeling better in the next couple of days.
Stephen and I would like to thank everyone for all of the thought and hard work that has been put into fundraising for our family. It means so much to us. We are so very thankful to you all. Please pray for Manny and our family. We love you guys.
Melissa and Stephen
Happy Mother's Day!!!!!!!!!!!
Wednesday, May 7, 2003 9:16 PM CDT Hey everyone, well Yesterday Samantha and Stevie arrived here at the hospital around 8:30 p.m. Manny was so happy. We've never seen his face light up as much as it did when the kids walked into his room. We haven't been able to seperate them since. They've been able to hang out with him most of the day. They have to wear masks, and are doing pretty good. Manny said, "Finally all five of us are together again."It feels so good to have all of the kids in one room. We missed them so much.
Manny has been doing so good. His hair is falling out everywhere. He's been itching all day, so Stephen shaved off what was left. He feels a lot better now. He looks cute.His head is nice and smooth. No new cells yet, but were praying that they'll grow, grow, grow. Please continue to pray for his recovery. Thank you for all of your great messages to Manny, and us. They help so much.
Stephen and Melissa
Tuesday, May 6, 2003 1:25 PM CDT We are having a good morning. Manny's very excited because in a couple of hours he'll get to see Samantha and Stevie. I don't know yet if they'll be able to come in the room. We're hoping at least Samantha since Stevie probably won't keep his mask on. I talked to Stephen about 30 min. ago and they were in West Virginia.
The doctors just made there way into Manny's room for their daily rounds. They said that Manny is doing really good and that they are very happy with his progress. Still no new cells. It will probably be a couple of weeks. We did get a little suprise though. Manny's hair started falling out this morning. He took a nap and when he woke up his hair was all over the pillow. I didn't say anything to him, because I know he'll start complaining of itching if he new. Other then that, he's hanging in there, and staying strong.
Melissa
Monday, May 5, 2003 3:04 PM CDT Hey everyone, haven't been able to update all morning. Manny is having a good day. Haven't had any major problems today. He's having a little trouble swallowing, because his mouth and throat are a little swollen, but he's hanging in there. He's been taking some pain meds to help control it. And it doesn't bother him after that.
We're all very excited because Stephen and my brother Tommy are driving to Ohio as we speak to pick up Samantha and Stevie. Manny is so excited. He's been asking all day when he'll be able to see them. The last time we were all together was April 16th so, we're all so anxious. They should be back Wednesday afternoon. And they'll be with us for a week. Manny says hello to everyone, and says he can't wait to go to California to visit. Because as he says it "I Looooove California". Thank you for all your prayers. We love you guys.
Meliss
Sunday, May 4, 2003 12:39 AM CDT Manny is still doing great. We are on day 3 since transplant. The side effects from Chemo are starting to show. This morning he started to show signs of mucousitis. It's a lot of mucous ,and open sores that are in his mouth and go down his throat to his stomach. Every child is different, so we don't know how severe his will get. There is pain medication that Manny will be able to take, so that he's comfortable. He should start losing his hair by the end if this week. The past 2 weeks have gone pretty smoothly so were praying that Manny will continue to stay strong, and that his body will accept the new cells and start growing. Every morning his labs are given to us so we can see if his WBC's are growing. So far nothing. It's still too early, but we should start seeing something in the next couple of weeks. Please pray that Manny's new cells grow and that his body accepts them. We'll keep you posted on his progress.
Melissa and Stephen
Friday, May 2, 2003 8:41 AM CDT Yesterday was the day that Stephen and I have been waiting for since the day we found out that Manny was diagnosed with ALD. Manny's second chance for a healthy life. A second birthday for him. He's doing great. Stephen, myself, Nana Rosa, and Tommy were all able to stand by Manny's side and watch his new cells slowly go into his central line and into his body. It only took about 30 min. for the whole process, but it was one of the most important moments of our lives.
This whole experience has changed Stephen and I and so many other people. Manny means the world to us, and we can't even imagine a day without his presence. We're so thankful for the Doctors that helped us get to this point. Yesterday Manny was just as happy as could be. He was laughing, and playing, spending time with Nana and his Nino. Just enjoying the day. He's so brave and strong, and has gone through so much in these last 3 weeks. From being poked at to having his teeth pulled and central lines put in. Staying in an isolated hospital 24 hours a day, without being able to step out of his room without his mask, he crys for his brother and sister every day and through it all, he always has a smile on his face, and gives us a thumbs up. Our son is our hero. This is just the begining for Manny. He suprises us everyday.
Thank you all for your prayers, and please continue to pray for Manny's recovery.
Melissa and Stephen
MANNY IS OUR HERO!!!!!!!!!!!!!!
Thursday, May 1, 2003 9:56 AM CDT Well, today is the big day. Manny has the transplant performed on him today at about 11:00 to noon. It's about a 15 minute process which brings the donors new white blood cells(WBC) in. Our hope is for Manny's body to accept the new cells and start making new WBC's. The last three days have been his roughest yet. He's had to take an immuno-supressant medicine which is called ATG. It brings his WBC count down to basically nothing to get ready for transplant day. The medicine has many side effects ranging from diarhea to fevers. Manny's dealt with both but is still in good spirits. He's a very strong boy and we are appreciative of all prayers and petitions. He's also in good spirits due to his Nana(Grandma Rosa) and his Nino(Uncle Tommy) showing up with gifts and love earlier this week. We know that Manny will get through the transplant and we ask if you could continue to pray for Manny that his body accepts the new cells so he can grow his own WBC's. We would like to thank everybody who has anything to do with fundraising and just the giving of one's heart. God bless you all and we'll update you within the night to let you all know how the transplant went. Thank you.
Stephen and Melissa
Saturday, April 26, 2003 6:35 PM CDT It's been a great day for Manny today. Two of his friends from school Tristin and Bailey were able to come visit him in the hospital. He had a lot of fun. He was so happy to see them and misses the rest of the kids from school so much. They brought him coloring books, and games, and best of all a Spiderman poster that we hung over his bed. He loves it. Trisitin and his mom are coming tomorrow again, and Manny can't stop asking if it's time for them to come. He's very excited. It was also the first day of the new medication for Chemo. He had a little bit of an upset stomach today, but his spirits were still pretty high. We're hoping that in the next couple of days things continue to go smoothly.
Back home in Azusa, California my very good friends Melissa Cruz, Jeanette Rios, and my sister Andrea had a yard sale fundraiser for Manny. We heard that it went pretty well. I want you guys to know how thankful we are for all of your love and support. You guys are the best. Thank you for everything. We love you. Please keep us in your thoughts and prayers, especially Manny.
Melissa and Stephen
Friday, April 25, 2003 8:30 PM CDT Manny finished the first part of the Chemo today. He has one more dose of the Busulfan Medication and then he starts Cytoxin which is given by IV. We're glad that's done because so far it's been the only thing that's been makeing Manny's stomach upset. Manny wasn't feeling to good today. He wasn't able to keep much down. He hasn't really had anything to eat today. But, he was asking for dinner so were hoping he's able to enjoy it and keep it down.
He talked to Samantha earlier today and was very happy to hear her voice. He really misses her and Stevie. We all miss them. It's hard to be away from them, but we're hoping that we'll be able to spend time together soon.
Manny's also very excited that 2 of his friends from school Tristin, and Bailey are going to visit him tomorrow. I know he'll be happy to spend time with them. He misses being at school so much. He had his first day with his new teacher today.It was a little hard for her to get him to stop talking, he spoke about his teachers at home Ms. Whitaker and Ms. Ballard the whole time. I don't even think they got any work done. Once he starts talking about something it's pretty hard to get him to stop. I'm sure we'll have a lot more to update tomorrow. Thank you for all of your prayers.
Stephen and Melissa
Thursday, April 24, 2003 7:29 PM CDT Today is almost over and we'll soon start day 4 of Chemotherapy. Manny is doing very well. The first part of Chemo medication is taken orally, and Manny did really good for the first 2 days. He couldn't keep it down yesterday so they had to give him an NG tube. It's bascically a feeding tube that goes in through the nose down into his stomach. It's very uncomfortable for him, but they've given him pain medication to help. He's gotten a little use to it now. It will hopefully come out tomorrow, because the second part of Chemo is given by IV, and that start's on Friday. He's being very strong and patient. He just wants to know when he can go home. I wish I had answers for him. But, he knows that he's here to get better, and that his mommy and daddy are here for him no matter what.
As for Stephen and I we're hanging in there with him. We've been alternating nights staying with him in his room. They only allow one parent to be there all night. Even though we're there until 1:00 in the morning and back at 7:00a.m. What ever works. I'm glad I had good news to give everyone, and will try to update again tomorrow. Thank you for all of your thoughts and prayers.
Stephen and Melissa
Tuesday, April 22, 2003 9:25 AM CDT Yesterday morning Manny's central lines were put in. He did great. No complications. We were in the recovery room for about 4 hours, but only because his room wasn't ready. He was finally in his own room at about 4:30. He's taking the change a little tough, but slowly adjusting to his new room and the people around him. We brought some things from his room at home to make it a little more comfortable for him. He's a little scared and wants to go home to see Samantha and Stevie. This morning he talked to Samantha for a while. He told her 3 times to be good and that he loved and misses her a lot. Since then he been a little better.
This morning at 4:00a.m. Manny started Chemo. He's doing really good, but some of the medication has made him a little off balance. It's still too early for any side effects to show. He's still happy and energetic, which is a good thing. He doesn't like the fact that he has a lot hooked up to his body. That's really his only complaint. I'm going to print all of the messages that are on his guest book and put them in his room, so please leave him a message. If you would like to send manny anything you can send it to the address below. We'll keep you updated.
Thank you for all of your prayers.
Melissa and Stephen
Manny Vargas Miramontes
Room # 5203
Duke University Medical Center
Durham, NC 27710
Private room # (919) 681-5203
Friday, April 18, 2003 3:41 PM CDT We are finally home. At least for the weekend, and we are so greatful for that. It feels so good to walk through our front doors. We're trying to enjoy it as much as we can, since we know as of this coming Monday we won't be able to make that many trips home.
Manny is doing great. His teeth were pulled on wednesday and he made a great recovery. He looks a little different, but very cute. He's still getting use to having to use his back teeth more since his 2 front top and bottom teeth are now gone. He had lot's of questions as to why he had to have them pulled, and has asked a lot for us to put them back in. We've reassured him over and over that he'll have new teeth soon.
We got the phone call about an hour ago that we have to be back at Duke at 7:30a.m. Monday morning to start the procedure for his main line. That's the begining of a long road ahead. Although we new that day was coming, it still gave us a feeling that we can't describe. Everything from feeling very happy, because we know that this is the begining to Manny's fight against ALD. But, also a feeling of fear to what is ahead. We have all the faith in the world that Manny will soon have a full and healthy recovery.
As soon as Manny has a room on the unit, we will have access to a computer and will be updating hopefully daily. Again thank you for all of your prayers and donations for Manny. We are so thankful for all of your support.
Stephen and Melissa
Tuesday, April 15, 2003 7:26 PM CDT Today has been a very long day for Manny and I. We've been to 4 appointments today starting at 8:30 this morning and finishing up at about 6:00 this evening. It was well worth it, so far all of the Doctor's have said that Manny is healthy and strong enough to go through with the transplant. That was great news to hear. Tomorrow morning Manny will be having 4 teeth pulled and 2 cavities filled in the OR at Duke. They want to make sure that we take every precaution to prevent infection. Thursday morning we will be meeting with Dr. Kurtzberg again to go over the transplant procedure. Manny and I will be heading home after that to rest. Stephen and I will drive back Sunday night and first thing Monday morning Manny will be in the OR having his line put in. Immediately following he will be admitted into the Pediatric Bone Marrow Unit. And they will start the Chemotherapy.
Samantha and Stevie are also doing great. They are in Ohio with Cecilia and Frank (stephen's parents).We miss them so much, but we know that there grandma and grandpa are taking great care of them. Manny talks about them everyday and misses them dearly. I know that time is going to fly bye, and we'll be together again. Thank you for all of your prayers. We love you all. Please continue to pray for Manny's health and our family.
Stephen and Melissa
Tuesday, April 15, 2003 7:07 PM CDT Well today has been a long day. Manny and I have been to about 4 appointments today starting at 8:30 this morning and we finally finished up at about 6:00. It was well worth it because so far all of the doctors have told me that Manny is healthy in everyway to go ahead with the transplant. We found out yesterday that they were able to find a donor match, and it's alrady at Duke Hosp. ready to go. Tomorrow Manny will be in the OR to have 4 teeth pulled and 2 cavities filled. They want to make sure that there will be no risk for infection, so there taking all the precautions before we start the Chemo therapy. All of his work up appointments will be done after tomorrow. On Thursday we meet with Dr. Kurtzberg to go over the whole procedure for the second time. After that I will be heading home again to get everything together that Manny will need in the hosp. We'll return to Duke on Sunday, and first thing Monday morning Manny will be in the OR again to have his line put in his chest. Immediately following he will be admitted into the Pediatric Bone Marrow Transplant Unit, and the medication for Chemotherapy will start. Manny is happy, and doing well. I thank everybody for all of support and prayers and just ask that you will continue to pray for Manny's health and our family. Manny is strong and I hope and pray everyday that he's going to fight this disease and get through this, and he'll be out and running around in no time. Please keep us in your prayers.
Stephen and Melissa
Thursday, April 10, 2003 6:52 PM CDT I'm very excited to let everyone know all the news that we have recieved. We arrived here at Duke University Hosp. on Monday April 7. Since then Manny has had multiple tests done everyday. I'm excited to announce that he will be a candidate to have a Cord Blood Stem Transplant. We also found out that Stevie does not have the genetic disease, but Samantha is a carrier of the genetic chromosome defect. Manny has many more tests that need to be done to make sure that he will be healthy enough to get through the ChemoTherapy. We're heading home for the weekend and returning Monday for additional tests. Since ALD does move quickly we're shooting for April 21st to start the Chemo, and May 1st will be the big day for transplant. I thank everyone for all of your prayers and support. Manny would like to let everyone know how much he misses them and loves them. Stephen and I would also like to thank all of our family and friends for all of your prayers.
Melissa and Stephen
Friday, April 4, 2003 5:20 PM CST Manny has seen the Neurologist today and we were able to view the MRI picture and see what the Doctor's concerns are and why they think that Manny may have ALD. They have advised us to have further testing done which we are. On Mon April 7,03 we will be on our way to Duke University in North Carolina where Manny will under-go tests for, about a week & ahalf. Everything from Blood work to a full evaluation from head to toe will be done. We will get the Lab results back no later then Friday. If the results confirm the ALD Disease following blood work will be done to see if he will be a canidate for a Bone Marrow Transplant. Samantha and Stevie will also be tested for leukodystrophy diseases. I will be updating as often as I can. We would appreciate everyone's prayers.
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