Journal History
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Monday, January 16, 2006 7:56 AM CST
Hello everybody,
It's been a very long time since I've posted. That is a great thing! Joey is doing Great! He is 6 years old. 5 years from diagnosis, almost 5 years from transplant. In June he will be 5 years from transplant. He is only taking Singulair as a medicine. WOW, Freddy my older son takes more medicine than him. I never thought that would be possible! But, thank God, it is. He is an older brother now. We welcomed Baby Jeffrey on September 29th of 2005. He is a cutie. He looks more like Freddy than Joey. Joey loves being a big brother.
Joey is in Kindergarten. He wears bilateral hearing aids. His speech is a little delayed but we are working with Speech therapists to help him. He is beginning to learn how to read. Although his passions are physical. He loves to ride his bike, which he just learned to ride without training wheels. We are very proud of him. He enjoys Karate, baseball and anything that is excitable. He loves playing with his older brother Freddy and not giving him a moments peace.
We are so thankful to God for the opportunity to see him grow and love him. His health has been great,he has an occasional tummy ache that of course, freaks us out. He continues to see doctors immediately upon any little complaint. He visited the ER for a thumbe that got caught in the van electrical door. He was fine. He had a little tiny thing removed from his lip like a year ago. He had to go under anasthesia for that.
Thursday, August 18, 2005 7:54 AM CDT
Dear friends and family,
I am updating as I promised. Joey and Daddy went to NY last month, July for his yearly check-up. We have come such a long way, Thank You Jesus! He traveled with Dad only because I am pregnant and was not allowed to travel. They basically did a physical checkup with the Oncologists, they did bloodwork, which, of course he still does not like. Apparently he fought his Father, which I warned him about. He turns into a little crazy guy. He head butted his Dad and I think he even bit his hand. He gets crazy with Mommy too, but I don't think as much. Mommy unfortunately is used to taking him for bloodwork and Daddy isn't. But, He did a great job taking care of him. We Praise Jesus that his bloodwork was good. He also had and EKG to monitor his heart. We need to continue to do that I believe either yearly or every other year. His heart needs to be monitored because of all the medicines that were given to him, the chemo and all those other meds. As I srite that, I feel so strange that I realize how many parents would love to be where we are. Who cares about his heart? He's alive! It is a big deal but nothing when you are fighting for them to live. I feel so blessed and yet so sad for all the families that will never have to worry about their babies hearts. What a privilege God has allowed us to be able to worry about those little things. Anyway, his blood work was good, his urnie collection was also good. You may imagine that we have great faith and pray for the best but without really speaking about it we hold our breath until the result are in.
They spent 2 bachelor days in NY with each other, that went well because he adores his Daddy and his Daddy took such good care of him. They went to the Toys R us of course, that was the highlight of the trip. They brought back a little gift for big brother Freddy and for soon to be baby brother Jefferey.
Now, we concentrated on school and speech and hearing and hearts and hurts and try to enjoy life every day that God grants us! JOey is now a blue belt in Karate. He is very proud of that. We are very proud of him too! He really sticks with it and enjoys it. We will start up baseball again soon. He started Kindergarten, full day! What a privilege that was to see him dressed in his little uniform heading to school with his new backpack and lunchbox and school supplies. I cannot tell you what a highlight of our lives that was. We know what odds he has surpassed to get there, what he has endured to get to where he is. Thank God he barely remembers most of it. He is so independent he practically didn't want me to walk him to the Kindergarten class. He said, " Mommy, I know where to go, you do not have to take me." He didn't even want his brother Freddy to take him. So, I would say he is adjusting well. Fortunately his best friend from last year is also in his class, Danny and he just loves that and feels very secure. He wears his hearing aids all day and the teacher wears an FM system which is like a little microphone that transmits what she says straight into his ear. That way he can really hear her better than the rest of the kids. It's really hard when there are alot of children in the classrom and making noise for him to hear. It's been likened to when you tape record a class and you hear all that background noise. It must be very hard to focus and hear the speaker. Anyway, thank God he doesn't give me a hard time about using them. He did try to remove them like the first or second day of school and he told me that he didn't need to use them anymore, that he was already a big boy. Apparently I believe he thinks at some point he will not use them anymore. Unfortunately unless God heals his ears or allows a new techonolgy to emerge he will use them for the rest of his life. But am I complaining? Certainly NOT! We have him to hug and hold and hear his cuteness and kiss and tickle and snuggle. Is there more? Absolutely NOT! That is life in a nutshell, being able to love those that you love the most. When your loved ones are called to Heaven, that is when we hurt, that is when life really changes, otherwise, life is good! Everything else is rather irrelevent when you really peel off what you need to be happy. Unfortunatley we all fall into our rat race of this world and we forget what is truly important. I guess what helps me is that when I start to fall in that rut I imagine myself in the hospital fighting for my babies life and I realize that nothing is important other than their life and being able to share it with them. What is greater than love from your babies? I haven't found anything better. We are truly blessed and underserving of the mercy God has shown us. Joey truly is a miracle and we thank God for that. We pray and ask you to continue praying for Joey and his complete healing of every cell in his body. That we may all enjoy our children for many years and never have to experience the grief of having to lose a child or struggle through a sickness. We also ask you to pray for our baby Jefferey that he may be born healthy so that we may add joy to our lives.
We are not scheduled to return to NY until next year, so... God willing may He gratn us a sick free uneventlful year until then. God bless you and your families and thank you for your friendship and prayers. I need to update the pictures. I will make a great effort to learn how to do that before Jefferey comes. Again, thank you for everything! Lots of love, Linny
Saturday, July 23, 2005 9:21 PM CDT
Wow, I just read my last post on the website and it's been 9 months since I posted. That's terrible. But....so great in so many ways. This life seems to further and further away from us. That is such a blessing in so many ways, yet at the same time it is something that is so much a part of our lives, distant yet so real. We will never forget what our Joey has had to endure to be where he is today and we don't take a single day for granted knowing how merciful God has been with our family. So many, so many families have had such terrible outcomes and we have just been so lucky and blessed to be able to enjoy our Joey for so long. I remember taking moments at a time, then minutes, then hours then days and weeks and months. You really appreciate every second. Now, it's as if we take so many things for granted again. But....it's never the same. We will always, everyday, see things so miraculously. Every night we kiss our children to sleep. Every day we have a good day without, fevers and colds and pain. We freak out when they do get sick. It kind of takes us back to where we were and could go at the switch of a millisecond. Life is very fragile and we have learned to live with that and try to enjoy as much as we can. Anyway, I am writing today because tommorrow Joey and Fred are on their way to Sloan Kettering for our yearly checkup. We were there last June. We hope and pray that all is well. We feel that God willing all is well. He will only need to do blood work and when he gets back a 12 hour urine collection. That's a big difference from all the things he had to do before. The oncologists don't feel they want him to do any CT's or scans unless they are called for. Of course, we walk on pins and needles praying that all is well.
Fred will go with Joey alone, the two of them for the first time. I cannot travel with them because I am 7 months pregnant and my doctor advised me that it would not be the safest thing to travel so late in my pregnancy. For those of you who don't know, we are having another boy. A blessing from God, but, as you may know, very unexpectedly. We felt we were done after all Joey has been through, and all we've been through and all we still need to take care of for him. But, it is God's will, not our own that run our lives and we have learned that. So...we await our little Jeffrey in October. Freddy will be staying with me, against his wishes, so I will not be alone. I will miss them terribly and feel very strange not to be there with him. But,,,I know Dad has it covered and Joey adores his dad. So...I will update, I think, I will, as soon as we get results. Please pray that all continues to go well for Joey and that God continues his healing, every cell in his body to continue to stay free and clear of disease. God bless you and you family and thanks for stopping in on us. Linny, Joey's mom
Monday, October 18, 2004 9:47 PM CDT
Friends and family,
I am so happy to announce that Joey has turned 5 years old! What a huge blessing! What a great God! He has heard our prayers and has helped us live through this nightmare. Joey is a beautiful 5 year old boy. He so much wants to be biggger like his brother. If he only knew how we have prayed for him to get to where he is. SIGH!!!
We have been celebrating since September. We thought we were going on a cruise with the whole family. It turned out that only we went. We cannot miss any opportunities. The rest of the family was scared of the Hurricane. We decided that if Disney sailed, we would be on that ship. Since then, Joey has been celebrating his birthday. We had a big birthday party at the Palladium with little race cars. He really had a great time for over 3 hours. He was the hit of the party. What a blessing it is to witness everything he can do. He had all the friends and family there that love him and have been with us through our most difficult times. He had a nother party in school and we took him to Disney too. We cannot pass up these opportunities that God has granted us. He really has had a blast. He even grew taller and was able to ride thnigs he had not been able to before. He rode Race Track and Epcot, Thunder Mountain Railroad at Magic Kingdom. He was so excited! We went with our little friend Anthony who also had a birthday on the same day. Anthony turned 4 and Joey turned 5! They had a great time.
He is doing very well. We cannot complain. He takes normal kid medicine. Singular and rhinocort for his allergies. That's it. Unbelievable, I know. He has an occasional cold or runny nose. But, thank God , no fevers.
We have not had to go to NY since June. We are scheduled to send bloodwork and urine samples to NY later next month. I guess it's not alot to ask for everything else is going well.
We have been battling with the hearing aids and FM system non stop. They don't fit well, they are loose. He needs alot of speech therapy. He's getting it. he's playing baseball on the Reds team. He is now a green belt in Karate. He goes to school with Freddy for PreK 4, half day.
We are loving and enjoying him so much. We have a lot to be thankful for.
I want to put some new peictures of the kids up. I gotta ttalk to Fred about that one. I still don't know how to scan anything. I know I should learn.
Please, keep praying for our Joey. Continue to pray for his healing. Thank you for visiting his website. God Bless, Lynette, Joey's mom
Wednesday, June 16, 2004 0:30 AM CDT
Dear friends,
WOW, it's been over 6 months since my last journal entry! That should tell you that thank God we are doing well.
We just got back from NY. We had sent a urine collection and it came back normal. We were scared but ecstatic! BIG SIGH of relief. We were told to go to NY for a normal physical check up and to meet with the long term follow up doctor.
We left on Wednseday night and thank God we were able to return on Saturday. We met with Dr. Cheung, the oncologist and they were so happy to see him. I imagine they don't see too many of their kids doing well. We talked about how he was doing and they checked him out, sort of like a physical, massaginf his little abdomen and throat, eyes, ears all that stuff. We saw Dr. LaQuaglia, coincidentally in the office. What a smile on his face! I saw the emotion in his face. What that man did for our baby is really inexplicable. He once again, gave the glory to God! God continue to bless him and those hands of his. He was the one that removed our inoperable tumor.
We had some blood drawn and we also had an ECHO of his heart. That really was no big deal. He's a big boy now. Mommy laid down on the bed with him and watched TV with him while the girl performed the ECHO. For those of you who have no idea what that is it's to check his heart out. It's kind of like a sonogram, they put a little gel on a mouselike thing and rub it around his chest. He did Great!
We met with the long term follow up doctor. Mainly to summarize what his treatment has been. They gave us a little condensed card with all the medicines he received during treatment, the dosages the side effects the dates of his surgeries and gave us some literature to read up on about late term effects. There are a few...but nothing we are not greatful to have to deal with. At least we have him to deal with it. Hearing loss is mainly the biggest one. He's sterile for the most part, we think.....He can never lift more than 25 lbs. because he cannot have unnecessary pressure on his heart. Stuff like that. We can definitely deal with all that. Thank you God! In all things, praise God!
Other than that...he finished preK3. We start PreK4 in August, half day again so he can continue speech. We have started private speech as well. He is language and speech delayed but...we can deal with that. He played baseball this year. he is almost a Camaflouge belt in Karate. He is 4 years old. He's a character. He's funny, he's handsome, he's skinny according to our standards. He loves simming with his brother Freddy and going to the Keys out on the boats. He loves cars and shoes and basketball. He's wearing hearing aids and speaks mostly English.
His brother Freddy just finished 1st grade. He's doing well. Dealing with a bratty little brother that worships the ground he walks on. Joey wants to do and wear and be just like big brother Freddy. Freddy is a Red belt in Karate. He's got a bit of a bad boy attitude, we are working on that. He's a good kid though. I think I'm a bit hard on him and expect alot from him. He likes playing Game cube, hunting swimming, he's a good reader. He had a perfect report card. He's handsome. He's lost 2 top teeth and 2 bottom teeth and they are growing in. We may need braces in the near future. He also played baseball and is looking forward to starting piano soon.
We hope to have a peaceful, restful summer this year, God willling. Stay tuned for the Golf tournament this year, probably sometime in October or November. There are so many children that need our help. Thank you for caring aabout us and please continue to pray for Joey's continued healing always! Thank you and God Bless you! Please believe that ther is a God!
Linny
Monday, November 10, 2003 1:38 PM CST
Hello to all our friends and family,
Well, the last time I wrote in here it was around September. As I said, if I don't write alot it means we are doing well and very busy with normal everyday life. That's a good thing.
At the moment we are in NY. We came up on Wednesday for scans on Thursday and Friday. We successfully completed all our tests. MIBG scan, CT scan, bone marrow aspirations. Those are the toughest because those need bandages and leave him a little hurt. Not too much though, we have good doctors with good hands and Thank God, Joey's a strong boy. You would never know by looking at him what he goes through. His not eating till 2pm is not that big a deal anymore. It's incredible what a couple of months will do for maturity. Now we just tell him he can't eat until he takes a picture and he's OK with that.
Today we started our last treatment of 3F8's. THANK YOU GOD!!!!!!! This week should be the last one. After this, hopefully it will just be following him up with scans every....we don't know how often yet...could be 3, 4, or 6 months as our oncologist said. They are thinking about it. We'll know before we leave here. We will still come up here for them because this is where we feel comfortable that they know him well and we really trust their opinions. So......just getting through this week and....waiting for the bone marrow results. The other 2 test came back No Evidence of Disease!!!!! THank You Jesus!!!!!!!We can breathe again. Right now he's sleeping off the medication he gets for the pain of the 3F8's. So is Daddy. He is more verbal now and he was telling the nurses, "Stop bothering me." He also told me that he did not want the doctors to hurt him. He said the medicine was hurting him and he had OOOWWWWWSSSS! He cried alot and he had pain. Hopefully tommorrow will be better. So, if you are reading this....pray for no pain tommorrow. It's just so incredible how many kids are here doing this. Apparently it might be approved to start going all around the states in all the Cancer Hospitals for children. We hope that more children can be saved from this terrible disease. We ran into a little friend who started this battle alongside of Joey. Her name is Julia and she is just a little older than Joey. Unfortunately and very sadly....her treatment has not gone as well. She has relapsed several times and now it seems that they don't have many options left. The mom looks devastated and looks like she doesn't know what else to do.....I can't imagine what her life has been like. While we have been home trying to resume as normal a life as we can....they have continuously been fighting...nonstop. This disease is a monster and it wants to take out children and for some reason unknown to us...we can't save them all....how very sad....
As you may well know...we are trying to keep raising funds for Dr. Cheung and Dr. Kushner's research here in Sloan Kettering. Their research is trying to push the limits of the care that is out there. They refuse to accept the standard of care which only give 30% survival rates for stage 4 Neuroblastoma. 30%, as we all know is failure. Although their statistics here at Sloan are not that much better...about 40 to 50%, we still think it's an improvement of what's out there. As well as...Dr. LaQuaglia who is the surgeon who removes tumors noone else will touch. We thank God He led us fin this place.
The golf tournament to benefit Families Fighting Neuroblastoma which is the non for profit company we developed to help fund reseaerch will be on Saturday December 6, 2003. This will be our 3rd year holding the event. Every year we have had a successful turnout, and this year we expect it to be even better since we are having it on a Saturday rather than a weekday. So if you are reading this and would like to participate and help us get rid of this disease, contact me at home at (954)442-7805 and I will give you details. Please also tell your friends and families. Thank you for caring, Linny.
Wednesday, September 24, 2003 0:40 AM CDT
hello everyone,
It's been a while since my last update. I seem to update only when things come up. Joey is doing great. He's just had a cold for the last 2 weeks and we've been visiting the doctor alot, yknow, I get scared. I just have to convince myself that it's nothing but a cold....But I worry that it'll turn into pneumonia or something...so...I take him to the doctor if he doesn't get better quickly. So...he had this cough for a week and I took him to the doctor, he had an ear infection, they put him on Zithromax. Sounds like a pretty normal kid. I took him back to make sure his ear was OK. It was great.,...but...he still had a cough. Flemmy cough. I know you didn't need to know that. But...my concern is pneumonia. I don't need for him to get that. So...his eyes look a little puffy to me, sort of like a sinus infection. The doctor put him on Biacin, another stronger antibiotic. He's been doing better but the doctor suggested we see an ENT, that's an ear nose throat specialist. He suggested we get a scan of his sinuses to make sure it's not a chronic thing. Can this kid have a break? So...today we went for the CT scan. It wasn't a major deal...I just hate being in hospitals. Especially alone. Fred was working and I had to do it by myself. He had to take chlorohydrate to help him fall asleep. It took him awhile, then he was kind of drunk. It went fine. Now we wait to get the results on Thursday. I know, God willing everything is going to be fine. It's just too much to have to keep doing these things. Oh well,
tommorrow he goes back to school. I think now he'll be happier to be in school than having to go to the hospital.
We are due back to NY in November. Not looking forward to that. But...looking forward to Joey's 4th birthday. October 15th. We are heading to Disney, God willing. It's like a crazy time with halloween and all, but we've never done the halloween thing. We hope to have a great time.
Freddy and Joey both are keeping us real busy between, school, karate and baseball. They both do karate and baseball and they are having a ball!!! I must update the pictures!!!!
Hope all is well with your families and thank you for caring about our Joey and continuing to check in on him.
Love, Linny
Tuesday, August 19, 2003 0:43 AM CDT
Hello friends and family,
We are all doing great!!! Joey is doing great!!!! We just got back from a nice little vacation at Marco Island. We spend 3 days at the beach as a family and the granparents went with us. We had a really nice time. The last time we went to Marco Island was right before Joey got diagnosed. It will be 3 years in October, God willing.
We thank God for all He has done for our family. I can't even begin to think back at all that we have been through. Especially Joey. It is unbelievable. To see him now is to almost forget what he went through. We thank Jesus and we thank all our friends and families who prayed for him.
He will be starting PreK3 now with Freddy. Freddy will be going to the 1st grade. He will be going to school with Freddy 3 days of the week and 2 days he will be going to Speech and Language at the Public School. He is getting speech classes now with our friend Monica, who also happens to be a Speech Pathologist, just in case any of you need one. She's working with him to make sure he's getting as much help as possible. Poor kids been through enough, I'd hate for kids to bother him about his speech too....but...what can you do? If they are going to bother him....he'll just have to show them some karate moves. He is a white belt in Karate....so...Freddy will soon be a Green belt. He will be testing this Saturday. Joey has to be a white belt until he's 4. That'll be in October , God willing. He's not even officially suppose to start until he's 4 but he was so persistent the Karate teacher let him try it out and it's been working out. He loves it. He's got some good moves already.
Other than that, life is good. All is well. We don't have to go back to NY, we hope until November and then he should receive his last 3F8 treatment. God willing. He'll also have to do the scans to make sure he is clean of disease. We hope that then they will space the scans further apart. WOW!!!! Unbelievable that we have reached this place. 3 years ago this seemed endless. And here we are but for the Grace of God!!!! Triumphant with our beautiful baby boy!!!! Weathered as a family....but yet together and trying to take one day at a time rebuilding our life. May God continue to Bless our family and our friends and may we grow to love and understand God's will more and more every day.!!!
Thanks for checking in. I will try to get some new cute pictures up soon. Love, Linny
Friday, August 1, 2003 10:47 PM CDT
Hello everybody,
I am tired but I just want to tell you that Joey is doing great!!!! All his scans were good. No Evidence of Disease!!!!That you Jesus! We are so very happy and greatful that God continues to bless our baby and take care of him. We are humbled by His mercy. Thank You God!!!We are back home and enjoying life. We are getting ready for his cousin Giselle's 15's and we can't wait to see both boys wearing tuxes. i will have to post the pictures when we get them. So...check back after the 16th. I will try to get that up soon. Thank you for your continued prayers!!!! God is listening!!!love you all, Linny
Life is great!!!
Wednesday, July 16, 2003 9:11 PM CDT
Well, Hello to all,
It's been a long time. I wrote yesterday but I think it got erased. So...here goes. We are presently in NY. We drove up because Joey had an ear infection and we could not fly. So.. rather than delay the scans any further, we hadn't been in NY since February and I was getting anxious. We decided to drive rather than postpone. But,,..we had to do it quickly because his tests were scheduled for Thursday. It was Tuesday when I took him to the Dr. in Florida and he said. I wouldn't fly with his ears like that. So...we didn't. We left Tuesday night at 9 pm and Fred drove until 3am and he had to stop because he couldn't drive any more. We stopped for about 4 hours to sleep at a Holiday Inn somewhere in Georgia and headed out early the next morning. We drove until we hit NY on Wednesday night at 1am in the morning. We were due in the clinic on Thursday morning for Joey's CT scan and bone marrows. But...as fate would have it...he had a fever and they had to cancel the tests. They gave him antibiotics through his IV. Oh, that wasn't fun either. Poor baby had to get pinched like 4 times trying to find a good vein. Up until now he had had his port and the pinch was more direct. At least they new that once they pinched they would have access. Now they have to find a good vein to put the IV in. So...when they finally got it they gave him antibiotics and sent us home. He ran fevers through the night and we were giving him Motrin and Tylenol. Friday morning it was a bit more controlled in the 99s but he didn't have a fever going into the MIBG scan. That's the one that's specific for Neuroblastoma. THey sedated him and he did fine. We got the results MOnday. Everything looked good on that one. Thank You Jesus!!!! I still sigh heavily because we do the CT scan tommorrow and the bone marrows as well. So we still have those to wait on. God willing all will be clear and well and we can go home with our baby. I pray to God that He continues to heal Joey and allows him to live life with us free of disease. He's had treatment this week. Monday was more painful than Tuesday. Tuesday was more painful than today. And...today was pretty good. We still gave him pain medication cuz we kindof dont' want to chance the pain. If we wait too long the pain can be too intense if we don't give him something prior to the pain. So...we get to skip treatment tommorrow because we have to do the scans. A blessing in disguise? Maybe. Hopefully. He's had some leg pain today. It kills me to see him messed up after seeming so normal for so long. He could barely walk today because he had pain in his legs. We think it has to do with the infection hes' been getting everyday in his leg. It's required before his treatment. It's supposed to be one of the sideeffects. It kills me though to see him limping and almost falling. It reminds me of the limp he had after transplant. I hate to see him like that. And...now he verbalizes things more. He says every morning, Mami, el doctor no pincha? Will the Dr. inject me? It breaks my heart to answer him.. I've resorted to lying. I hate to do it...but otherwise he'll be crying for hours before we even get to the clinic. He keeps telling me he wants to go home to his white house. That's how he describes out home in Pembroke Pines. He says he doesn't like the little water that's the medicine that gives him pain. He tells me, me hace ow...it hurts. I ask him where does it hurt and he tells me todo, todo. everywhere. SIGH,,,,what could we do? Pray and pray that it's all over soon and that God continues to be merciful and get him through this and every treatment he gets. He's so anxious to start school. I hope and pray that God will allow that. I know it's a big deal for him and I would love to see him fulfill that!! It doesn't seem like alot to ask for, to see my baby start preschool, but when I'm here and I see all the families and what they are going through day by day, how some children never made it this far. all I can do is praise GOd and thank Him for all the special moments the He has allowed us to share with Joey. He is indeed a lucky boy as are we to have his company. I would just wish and pray that God continues to allow him to live life. I know it's not in my hands and I guess, that helps me move forward. I cannot think beyond that or try to analyze it any further or try to ask questions.....we take one day at a time and thank God for it. Thank you Jesus for our children and their health. I also pray for our family that we continue to love each other and weather these difficult moments together. We see so much saddness in so many ways that it's hard sometimes to get past it. SIGH....so...may God bless your family tonight. Thank you for caring about our Joey and our family and mostly thank you for you continued prayers.
God Bless, Linny
ps. Freddy is doing great. He's a great big brother.
Wednesday, May 28, 2003 11:13 PM CDT
Hello friends and family,
Again,...it's been over a month that I've updated Joey's webpage. That's a good sign. It means that Thank God all is going well with Joey. We thank God that he is living life to the fullest and we are graciously enjoying him to the utmost. We are sooooo greatful to God to have him with us, to smell his little skin, to feel the warmth of his little breathing body as he lays so innocently in bed while asleep. What a blessing God has granted us!!! How very lucky and blessed we feel!!!
OK, I'm getting sad...so I'll stop that. Snap out of it. I live life as normally as possible with the distant reminder that life is fragile and not all we think is is meant to be. Life is but a tiny breath and we need to enjoy it as we can.
Joey has been doing great. We got a little concerned because he had been complaining about back pain. So...we ran some tests, we did an Xray of his lungs. That looked fine. Then we did an ultrasound of his lower back and abdomen to see if his kidneys were OK. That was fine. We did blood work..that looks fine. We did a urine collection an sent that to NY. That is fine too. So, everything seems fine. We don't have to go to NY until end of June. THey told us today June 30 but that would mean that July 4th we would be in NY so...we might have to change that. I have to call tommorrow.
Joey is doing Karate, he's a white belt. Freddy is a Camoflauge belt already. Joey is the smallest kid in the class but they have made an exception for him because he is very motivated and he wants to be just like his big brother. He is still getting home schooled but hopefully in September he will be in real school. He'll be getting Speech and Language 2 times a week for 2 days. The other days he will be Half day at Freddy's school in PreK 3. What a big boy.
Brother Freddy just turned 6 years old. We were able to take them to Disney and vowed not to return until they are 10 years old. But...we probably will return next year. We will most likely forget how hot and tiring it was.
We just spent Memorial Weekend at the Keys at "abuelos" house. They had a blast. Again, not very relaxing for us becuase the kids are just non stop. Freddy is our fisherman, up bright and early with his fathers cap and shoes ready to get bait to go fishing. Joey is the boat man. He loves abuelos boat. They were both little fish and remained in the pool for as long as they could. THey are now officially brown.
They did have a blast and thats what makes us happy. TO see how much fun life could be after everything we've been through, especially Joey. We thank God!!!!!
I'll keep you posted after we get back from MY. We will be there for testing, all his scans and then a week for his treatment, so about 2 weeks. Pray again specifically that all his scans are clean of disease and for his continued healing. Thank you for all your prayers. God bless you and your families. Love, Linny
Sunday, April 13, 2003 3:29 PM CDT
Hello friends,
I haven't written in over a month so that's a great thing. When things are good we are soooo busy doing normal stuff and just being busy with life. I don't want you to think that I've forgotten the millions of people that have been praying for Joey. We appreciate each and every prayer that is said on Joey's behalf and we truly believe in our hearts that those prayers along with everybody's concern is what has gotten us through this. We thank God that Joey is doing well and that he continues to do well. We continue to ask Jesus for his healing and that he keeps every cell in his body clean of disease. We hope and pray that we will be able to see our Joey grow into a handsome young man.
Today Joey is an energetic (super energetic) little 3 1/2 year old boy. He is constantly getting into things, singing alllllllllll day long. He wants to go to school very badly, he wants to do Karate like his brother, he wants to play baseball and soccer. Unfortunately he is still too little for any of those sports. We are hoping that next week they are going to try him out for Karate because he has been very motivated. We'll see....it sure would manke my life alot easier. He spends the entire hour fighting with me trying to run into Freddy's class of Karate.
He plays in the playgrounds every time Freddy has Baseball or Soccer practice. He is nonstop, thank God!!!! He is a blessing to watch. He's a little beautiful miracle and not a day or hours go by that we don't realize that. We are so greatful to God that he has allowed us all this extra time with him. We know that God gave him to us as a gift and He will allow us to have him for as long as He determines. In the meantime we will love him and cherish every moment we can. We feel so greatful to see his little face shine and light up when he sees something exciting. He has the most beautiful expressive eyes. He sings most of the day like a little angel. He doesn't quite behave like one, but we sometimes have to laugh cuz it gives us so much pleasure to know that he has life and spunk!!!!
As far as his treatment. Right now he's rather normal. All he takes at home is one medicine called Bactrim which is for prevention of the PCP Pneumonia he had not this past Christmas but the prior one. He takes that 3 days a week, 2 times. Other than that,....he's pretty normal. He has scars of course that will always remind us of his battle, but other than that....he's as normal as could be. He does have to wear his hearing aids. We try to get them on as much as possible because that way he will hear the sounds he's missing. He speaks alot, he's just missing some sounds like the s, the t, f, g. Some of the harder ones. He's getting homebound teaching right now, but we are trying to get him into school for this September. He's really anxious to go and...Mommy could certainly use some hours to herself. He really would love to be with other kids. He needs the discipline too. He doesn't listen to us too much and we are way too lenient on him. Wrong? Perhaps...but he's such a cutie, and he's cried soooo much already. Anyway, it bothers others much more than it bothers us. We remember what it was like for him in the hospital and...really, nothing he does will be enough for us to really get mad at him. Maybe for a second.
He will start getting his immunizations soon. He still does not have them but just recently they told us his immune system is strong enough to start them. They all have to be dead viruses. Hepofully he'll start school in September. We hope to visit Mickey soon. Probably for Freddy's 6th birthday now in May. We love to see him get excited. We don't have to return to NY until June, God willing everything continues well, as it has. He will have scans in June and then a week of antibody treatment. Nothing..compared to what he's been through. Every now and then we get scared if he complains that something hurts. I know we will live with that uncertainty forever...but we can't complain. For now God is watching over him and we have handed him over to God. We know his life is in God's hands and that's all we can count on.
Thank you for checking up on us and for caring about our little Joey. He is an angel among us and we appreciate your prayers. Thank You. We love you. Linny
Saturday, March 1, 2003 10:10 PM CST
Well, hello to everybody.
We are very happy to say that we will be returning home tomorrow, God willing.
All of Joey's scans came back fine. NED, no evidence of disease. We had treatment, which was rough, but every day it got progressively better. Now we don't have to return until June, we hope and pray to God, that will be all. Then we will have to return once more for treatment if all continues to go well with God's help.
We couldn't be happier. We are excited to be going back home to our normal lives. OH..how could I forget? They, the doctors took out Joey's port. That means, no more rushing to the hospital if he gets a fever. Well, I'll still probably freak out and want to take him but we won't be worried about a line infection anymore because,...he doesn't have a line anymore. WOW! What a huge step that was for him, and for us too. A year ago we had a port put in after we removed his double lumin line. Now here we are without a port. It's great but scary at the same time. Now when we come he'll have to get an IV line on his arm. Oh well, at least he'll be like normal back home to go like in the pools and stuff. I can't wait to be able to take him to the beach. He's really looking forward to doing that. Freddy too.
We had some fun around the city today. It was kind of nice, cuz we don't get to do too much funstuff around here. We had them get some haircuts a really cool place here for kids. Joey got to sit in this little car thing and the place was loaded with toys. We had lunch in the street after walking around a little, we were gonna catch a puppet show but it was going to be for a private party so we couldn't see it, but we ended up going to the Scholastic Store that had a Dinosaur Day and we had some fun there. We also took Freddy to a collector's store for some new YuGiOh cards. We are all getting into it and it was cool to go to one of those little hidden stores with lots of collector cards. So...all in all we had a great day, Thank You God for everything!
We want to say thanks to Nilo and Lucy` they were here in NY on their anniversary and they stopped by to say hello. That was very nice of them. They looked very rested.
Hope to see you all soon, back home. Thank you foryour continued prayers, please don't stop praying for our Joey. His battle is not over as we are reminded here while seeing all the little children who continue their battle with this terrible disease. Thank you for everything you've done for us and our family.
Love, Linny
Tuesday, February 25, 2003 9:47 PM CST
Hello again,
Well, 2 hard days behind us. Joey has had 2 rough days of treatment. He's had alot of pain. Today he got very swollen. He looked liked he had the mumps. His face just kind of blew up. We think it's an allergic reaction to the treatment. He's been allergic before. It's just that they are infusing this thing now much quicker. We still end up being in the clinic for a long time. Actually we've been gettng out really late. Like at 4pm. He has to get this thing called GMC-SF and he's hooked up to that for about 3 hours. That's not painful, but it's inconvenient because he's stuck to the IV pole. He's getting so big he rides the IV pole like he bigger kids like to. I'm not sure you understand "riding the IV pole" unless you've been in the hospital world for a while. The kids jump on to the rolling legs on the pole and you push them along as they hold on. It's fun thing for hospital kids. Anyway, tommorrow we hope to get the bone marrow results. The other 2 tests, thank GOD seem to be good. We just need that last one to breathe better.
We are now at the Ronald McDonald and someone here and at the clinic has the chicken pox so we are under lockdown quarantine. Which is bad news for us. That means no activities for the kids. People can;'t get together in the common areas so they close the playroom, the dining room and anyplace that the kids could go and play. So....we are kind of just stuck in the room. It's been rough though cuz we've been getting home late and Joey is so drugged up that he's very irritable and today, swollen so we can't really go anywhere with him anyway, so....SIGH...we'll just keep trudging along and praying that the rest of this week goes by quickly for us and that Joey will have no pain. Please pray specifically for that. God tells us to be specific...we would like Joey to have no pain during his treatment and to be completely free of disease. We pray that God continues to heal Joey and make EVERY cell in his body clean and healthy. Please pray for our family as well. Thanks. Keep in touch. We miss our home and our support groups at home. You really mean alot to us for being there through all our tribulations. God bless you!!!
Love, Linny
Sunday, February 23, 2003 7:52 AM CST
Hello everybody,
This will be my second attempt to update. I lost the first one. I hate when that happens. Anyway, we are in NY. We arrived on Tuesday with Corporate Angels. Joey started testing on Wednesday. He had the bone scan on Wednesday, the bone marrow aspirations and CT scan on Thursday and the MIBG scan on Friday. We were very happy to finish on Friday. We won't have results until about Tuesday. As you can imagine, it is rather nerve wrecking but we just try not to think about it and pray that everything will be just fine. What else can you do? It's rather useless to drive ourselves crazy, it's only God's will that will play out and we have to do our part to pray without ceasing.
We decided to drive out to visit a friend of Fred's out in Conneticut yesterday, Saturday. The kids were really wanting to play in the snow and it's kind of yucky here in the city with the traffic....so....we thought it would be nice to get out and away from the city. Unfortunately it was kind of rainy and they were only able to play for a short while but they did get to go outside and make a snowman and throw some snowballs. They even rode around on a sled. It was very nice to get out.
We are scheduled to start treatment on Monday. Today we'll just hang out. We have to move to the Ronald McDonald house today. We've been staying at a very nice hotel in the city across from Central Park. It's part of an American Cancer Society program that this hotel participates in, the only thing is that the longest you can stay is 5 days....so....we are moving out today. We might be able to take the kids to a little kids play or something. I love for them to do things like that that we don't really get to do back home.
It's funny how we get to spend so much family time together when we are here. That's kind of one of the good things.
The doctor encouraged us to have Joey interact with children as much as possible. His life should be back to normal, according to them. WHEW!!!! That is so nice to hear. Although he still isn't immunized, they said it really shouldn't be a concern. I don't know about that but....we'll see. They were talking about having him go to school and everything. He'd love that.
We might take out his port, the one he still has under his chest for the IV's. The doctor feels that because now he'll only be coming every 3 months that it would be best. That just means that if he gets a fever back home we don't have to rush to the hospital and that when we come for treatment they'll have to place an IV on his arm. That doesn't sound like much fun, but alot of the kids here already do that, and they are younger than Joey, some of them.
It's nice to see our friends that we've made here but it's also very sad. Many of the kids are not doing well as Joey is...and we thank God Joey is doing well but at the same time we feel so bad for the other families. This is a terrible thing!!!! We pray to God that all of Joey's test come back clear. We pray that every little cell in his body is clean and clear of disease and that they are all healthy!!!! We so much love our kids and would love for Jesus to grant us to see them grow!!!!
I know that if you are reading this you pray for our Joey. So...thank you and please continue to pray for him and our family. We do believe in the power of prayer and we believe that your prayers do count. Please tell others about Joey and our website so they too can pray for him. We'd love for Jesus to be bombared with prayer requests for our little baby.
Keep posted and I'll write about his results when I get them.
Lots of love, Linny
PS How do you like the new page with the turtles?
Friday, February 7, 2003 8:50 PM CST
Hello everybody.
Joey is doing absolutely great! Praise the Lord!!!!! I want to apologize for not writing sooner. It's been a long time since my last entry. I really got caught up in the normalcy of our life and enjoying our kids and I really didn't want to deal with this life and our disease.
Joey has been doing so great, thank God!!!! that life has been as good as it can be. We are really blessed to have this special time. Joey looks great, feels great and is doing everything a little boy his age should be doing. We cannot express how happy we are. It takes so little to make us happy now. That's one of the good things that has come from our life.
Let's see, let me update you a little on what's been going on. Well, we were in NY in November and all the scans were good. Thank God. We then came home and tried to live as normally as we could knowing that we would not have to return to NY until February. It would be the first time we would not have to go every month. We then went on Joey's Make a Wish trip to Orlando in December. WOW, was that the geatest. I can't even begi to tell you what a great time we had. They picked us up in a limo, they flew us to Orlando, we stayed at Give Kids the World. We went to all the parks, didn't have to make any lives, took pictures and were able to meet all the characters Joey and Freddy wanted to meet....we had free breakfast and dinner and ice cream every night, we were able to go to the VERY MERRY CHRISTMAS.....We had an absolutely awesome time. We have millions of pictures to remind us of the great time we had and especially the special moments we will never forget Joey had there. It really was a wish come true!
We had a beautiful Christmas at home. Finally we were able to enjoy a christmas at home together. Freddy and Joey had a great time and we were so happy to witness that together and so very blessed that we have been given the opportunity to experience that beautiful time together. Hopefully, God willing we will be able to have many more like that for a long time, but nonetheless, this year was great! Thank you Jesus!
Our new year has been great....we have been enjoying each other going to Karate, Baseball and Soccer. We are trying to make up for all we lost out on. Joey is enjoying it all as well, as he wishes he too could already play. Unfortunetly he is still too young, but he gets to run around and wear his own Karate suit. You have to see that. It's just too cute. I have to roll up his sleeve and his pants cuz they're so big on him. He knows some punches too, as Freddy teaches him.
Freddy is doing well in Kindergarten. He continues his crush on last years little girlfriend. He even went on a Circus date with her for her birthday. It was the cutest thing. He is definitly busy with all his extra-curricular activities, which he needs so he doesn't drive Mommy crazy at home running around with little brother and making a mess. Thank You Jesus for our life.
SIGH....now we start to think about going back to NY. We will be leaving the 17th for 2 weeks. First week will be scans, for 3 days. The following week will be the treatment, as he has not yet developed the antibody. So...needless to say we are nervous... but without thinking about it too much, we try not to think about it and just hand it over to Jesus. What else can we do? That is the only thing that lets us live sanely. We hope and pray and believe that God has healed our baby boy and that He will continue to do so. We ask that you continue your prayers forever and ever asking Jesus to keep our Joey clean of disease and to allow him a wonderfully long and painless life. As we all know he has endured more pain and suffering than any individual should in a lifetime. We praise God for also allowing him to feel fun and life and normalcy in these last few months. These moments are irreplacable moments and memories for us that we hold so precious as we know how different it could have been.
Although we live with uncertainty and somewhat of fear for the future, we also live lving our child and savoring every moment God gives us with our children as that is what we live for. To see their smiles and hear their laughs and enjoy their hugs and kisses. What else is important in life my friends???? Not more than that...I can tell you. Nothing is more important than that. Thank God for what He has given you...it is a blessing to be healthy and alive.
Please keep Joey in you prayers and may you be blessed by God as well. Lots of love, thanks for checking in. Linny
Wednesday, November 20, 2002 at 04:39 PM (CST)
Hello everyone,
Sorry I haven't given you the absolute greatest news yet. Joey's scans all came back great. No Evidence of Disease. Could we be any luckier? We are so greatful to God!!! We know that all this is His doing and we feel so lucky and greatful that our baby boy is doing well. All his scans came back good and that's all we can ask for. He's had somewhat of a bad week this week. He had terrible pain on Monday. Tuesday was much better but he still had pain. Then today he had some pain but again better than Monday. At least to day is Wednesday, the hump day and we are over the hump. Freddy's been having a great time at the playroom in the clinic, THE WHOLE DAY. They are practically babysitting or kidsitting him. He loves it. They do lots of crafts and people come like from the Museum of Art and do projects with the kids. Joey gets to play for awhile too. There's a new thing this time around. Before we do the 3F8's he has to get GFMC which is infused throught the IV for about an hour and a half and then he gets a flush which is for another half hour, so that's 2 hours of being hooked up to the IV before we even start the 3 F8's which takes another 2 hours. So...it's been a long couple of days. It seems like we've been here a month already. We can't wait to go home. We hate being here. Joey wanted to get on the "avion" (plane) and come home. Poor kid. He hates having to go tothe hospital. He's OK when he's playing in the playroom but he does not want to go to the treatment room. We are in the room with a little friend named Payton. She's a little over 2. We met them when they first came from Orlando and the've done the treatment right alongside Joey but a little further behind. She's doing well and we are sharing the same room. Joey likes to watch her and he gets concerned when she cries. He tells us..."Baby crying." He's so cute. He gets soooo bloated by the end of the day. He has a lot of fluid retention and from the crying and the pain...he just looks....not like Joey....but we can't complain. His scans are good and we move forward with more HOPE and praise to GOD for keeping him healthy. We hope to be home soon. Hopefully Saturday we fly back. Don't think we'll be flying with Corporate Angels...so far they don't have a flight for us. So...Saturday night God willing we'll be in our own home. I'll write later. Lots of love, and thanks for the prayers!!!! Linny
Sunday, November 17, 2002 at 08:29 PM (CST)
Hi. I don't how many people are reading this but....just want to let you know that everything is OK so far. The weekend came and went. On Friday we went out to Pennsylvania to see Thomas the Train. It was fun. We took some pictures of the kids. We saw beautiful countryside trees changing colors and we enjoyed our children. That's what it's all about. Saturday we stayed in all day at the Ronald McDonald House cuz it was a very ugly day, rainy and cold and Daddy Bear felt bad of his tummy. We think he got the same tummy virus that Freddy had and we think Joey might have too. Daddy got it really bad. Kids....they just bounce back better. Thank God. Anyway, today Sunday we had to get out of the house again. It's many many hours in a little room and we drive each other nuts. Especially the kids. Joey just HAS to have everything Freddy is playing with. Anyway, we did some house activities like BINGO and Bowling for dollars and painting and playing hide and go seek...with a gorilla stuffed animal....anyway, we went to see Santa Clause 2. I would've liked to have saved it for Christmas but we really needed to get out a little while and the weather is soooooo yucky we couldn't really go anywhere else and there's really nothing else PG playing.so.....we went and it was GREAT!! I think Fred and I enjoyed it more than the kids..but they enjoyed it too. It was really funny, I thought anyway.
So....tommorrow is another week...we start Immunotherapy. Not so concerned about that as I am a little anxious about the results of the scans. We should be getting those tommorrow. Sometimes they take a few days but we should have some results. I know and pray that everything is fine and if you read this post please just say a quick prayer on Joey's behalf that all his tests and scans be clear of any disease and that God continue to be Merciful and continue healing our baby boy. We thank God for our friends that care.
Keep posted and I'll write soon. Love, Linny
Wednesday, November 13, 2002 at 09:57 PM (CST)
Hello again,
Well, yesterday we slept through the night without fever. We went to the clinic at about 10am and Joey was fine. Other than he was hungry and couldn't eat. We had the CT scan at about 12:30pm and straight after that they take him to the Bone Marrow aspirates. He gets anesthesia on these days because they need him really asleep for the Bone Marrows, those must be quite painful considering the size of the syringes they have to use to extract the marrow.
He woke up fine. Mommy had a grilled cheese ready for him to eat and apple juice. He had been asking for it allllllll day. Poor baby. He never want apple juice, then when he does ask for it, he can't get it. Figure that.
Everthing went well. It seems he had a little pain so we gave him Tylenol and he's been OK playing and having fun, no fever, so...we're happy. Tommorrow is MIBG scan. We had the MIBG injection at about 2pm today for tommorrows scan. I'm rather anxious about the results...but it's all in God's hands and I'll try not to think about them. Fred the father is feeling sick himself tonight. I feel like I'm running a clinic here. Freddy my son is still not completely over that stomach thing and he's lost some weight. I'm not looking forward to my mother seeing him so thin. I'm not going to hear the end of it. Oh well, what can I do? Everybody is asleep so it's nice an peaceful. We played BINGO tonight at the Ronald McDonald House. It's kind of the highlight of the week around here. Freddy and Joey both won a prize, a Goofy and a Mickey. It keeps us busy. Anyway, keep checking in on us and please please pray for clean scans, for absolutely no disease and completely health cells!!!! Thank you and God Bless you.
Wednesday, November 13, 2002 at 01:02 AM (CST)
Hi all!
Quick update cuz it's 2am and I'm very tired. We are scanning in NY. Today we had our bone scan. Everything went well. Joey didn't or couldn't eat til after the scan so he didn't eat til after like 3:30. That's cruel but...we haven't been able to change that. We would like to though. Anyway, he woke up from the scan and fell back asleep. He was kind of chilly. I let him sleep in the clinic til about 5pm then we took a cab home. We went down to the playroom for a little while and I noticed his hands were unusaully warm. We went the room and he had a fever of 101 so...we called the hospital. We are suppose to call about 100.5 because of his port. They don't want him to get a line infection. We were told to wait an hour and retake his temp. It climbed to 102.8 so...we got in a cab and took him to Urgent care where they checked him out gave him IV antibiotic and at about 12am sent us home. We are due back tommorrow for CT scan and Bone Marrow aspirates...but with this little fever...we don't know if that's still going to happen tommorrow. He broke the fever with Tylenol and he's not suppose to get anything after 12pm because he's supposed to get anesthesia tommorrow. I'm going to go cuddle him now and hope he's not hot. Good Night. Please pray for Joey!!!
Love, Linny
Monday, November 11, 2002 at 06:47 AM (CST)
Hello everybody,
I apologize for not updating sooner, but I guess I try to think that this part of our lives is not a reality and I try to forget about it when Joey is doing well. Thank God that Joey is doing well and we have had a chance to feel almost as normal a family as we have been able to in a long time.
But, reality called few days ago and scheduled us back to return to NY. I swear, when I got the call to schedule Joey's scans and treatment (because he does not yet have the HAMA antibody), I felt like they were intruding in my almost perfectly normal life. Not to mention that...it's always nerve wrecking to have to do these scans because you know that they are looking to see if the disease has come back...and although we'd need to know that we don't want to go poking around.. but we know it has to be done.
We thank God for this time that He has allowed us with Joey to enjoy him and our lives with him. He really is a beautiful loving child and we feel very lucky to have him. We feel sch pain for the other families that have lost their babies already and others that have relapsed already as well. Its's heart breaking and we can't imagine or don't want to imagine what that is like. With everything that we've been through we are still very fortunate to have our little Joey.
We are now in Philadelphia waiting to drive to Manhattan today. We flew in with Corporate Angels, out of Vero Beach. Thank God because the commercial flights were very expensive, like $460 a person. So we drove to Vero Beach got on a private jet with about 3 other corporate people an it was a great trip. We are now in Philly waiting to perhaps see the Liberty Bell, it's educational for Freddy and me too, I've never seen it. But, the temperature here and the weather don't seem to want to cooperate today, it's kind of drizzely and rainy today, we'll see.
We are scheduled to have scans Tuesday, Wednesday and Thursday. On Tuesday, he's got Bone scan injection at 11am, then a bone scan at 2pm with sedation. On Wednesday he has a CT scan with and then a Bone Marrow aspiration with anesthesia after. That's the one that hurts because of the large needles that are used on his hip bones to extract the bone marrow. He has 2 sites on the back of his hips and 2 in the front. They put bandages on them, pretty large bandages to put pressure so that the bleeding will stop. By 24 hours we should be able to remove them. I hate that test. Anyway, on Thursday he has an MIBG injection for the MIBG test later at about 2pm.And...that should be it. Usually the worst part about it is keeping him from eating until the tests are done. That is no easy feat.
We should be arriving at the Ronald McDonald House today and then we will be there approximately 2 weeks. Until about the 22nd of Novemeber. After the week of scans then we have to do the Immunotherapy treatment the next week. Unfotunately, he does not have the HAMA and so we have to continue the infusion. Please just pray that all the scans are clear and that the Immunotherapy won't be painful. Mostly though that the scans are clear and that nothing shows up on them. It is very nerve wracking We try not to think about it and think that everything is going to come out well. Otherwise, I guess we'd be pretty crazy. We know that we have turned Joey over to God in so many instances that we know that God is taking care of him and it will ultimately be His will. We hope and pray that He continues to find mercy with us and allow Joey to stay with us.
With all that we have to think about I kind of almost forgot to talk about the wonderful GOLF TOURNAMENT that we just had for Families Fighting Neuroblastoma. It was the 2nd GOLF TOURNAMENT on behalf of Joey. We have many people to thank who have given alot of their time and energy to make this event as successful as it has been. First and foremost, we thank God for giving us a beautiful cool sunny day on which to play at the Fort Lauderdale Country Club. We thank Scott Taylor and his wife Celia for comitting to this cause and for loving Joey to take the time and effort to make the tournament a success. We also thank Alex Fernandez, Hector Ventura, Javier Vasquez, John Pena, Jorge Vallejo and our new found friend David Pezzino who is also a Neuroblastoma survivor and now a friend. We thank all the volunteers that helped to make things run smoothly. It was a long day, but also a beautiful day that will be very rewarding to Families Fighting Neuroblastoma. Please know that all your effort and help is appreciated and not taken lightly. We understand the demands on our lives and the time and effort that it takes to make such a uccessful event come to be. Again, THANK YOU!
If you were unabl to attend, don't fret, next year we hope to have it again. We hope that every year will be bigger and better with your help and contributions. Please make a date of it, it's usually around October or November.
We are hoping to plan some other type of fundraiser for the first half of the coming year. We have ideas but nothing for sure yet. Please contact us if you want to be involved as we can always use all the help we can get.
Keep checking back and don't forget to pray for clear scans!! Lots of love, Linny
Wednesday, October 02, 2002 at 10:13 PM (CDT)
Hello friends,
I'm writing to you from NY. Joey is doing very very well!!! Today, after 2 days of Immunotherapy we went through the treatment without pain!!!! We believe and hope and pray that he now has the HAMA. That's the thing we thought he had and we weren't going to have to come to NY for. Apparently, he was borderline and then when we re-tested he was negative for the HAMA, but because he didn't have barely any pain today we think he has it now. We are praying very hard for that!!!! If he does have it, and we will know it after about 2 weeks when we are back home and we test his blood, if he does have it we won't have to do it again for awhile until he loses it.
I don't understand it very well myself, only that if he has the HAMA he doesn't have to come to NY to do this awful treatment thing. We are ecstatic that he didn't have pain today. We went through the treatment with only Vistral, 2 Vistrals, that's like Bendaryl. That's it. He walked out of the clinic like he didn't even have treatment today. I'm really in disbelief!!! He's NEVER done that!!! He's always drugged up and very irritable and it's just terrible, but today was so different. That's what the nurses say happens when the kids start to produce this antibody by themselves. So....we are very excited and hopeful. We still have tommorrow and Friday and we still have to do it...but we have something to look forward to and that's not having to come and do it again for awhile maybe.
We are scheduled to leave on Friday, we are hoping to make it back to FL to go to Fred's Immaculate 20th year reunion. It'll be nice if we can get out for that. We do very few fun adult things.
Joey will have to take the Accutane again for the next 2 weeks and hopefully everything will continue going well with God's help.
We thank everybody for your prayers!!!! We prayed for no pain and he had no pain!!!! God asks us to be specific in what we ask for so...continue praying for Joey's healing and full healthy cells in all his little body so that we may continue to live with him and see him grow to be the young handsome man we all want to see him grow up to be. What a beautiful testimony he will be to God!!!!God has gotten him and us to where we are and we want to glorify His name and give all the glory to Him!!!! Life is good right now and we are enjoying it as much as we can!!!
We are sorry to say that we have lost 2 more little friends to this horrible disease and that is why it is sooooo very important to us to raise funds to continue research to find a cure for this monster. We are fortunate to have our Joey, and we are so saddened for all the families we have met that have lost their little babies. May we say a prayer for our little friends Brandon and Corey who lost their little lives this past month. That they may find peace and no more suffering alongside of God and may their families find the strength to continue with life without them.!!!!
Thank you for checking in on us and for caring about our family!!!! God bless!!!! Linny
Saturday, September 28, 2002 at 03:31 PM (CDT)
Hello everyone,
Well, it's Saturday and we are waiting for Fred to get back from a Dental Seminar. We miss him alot!!! He's been gone since Wed. night. He is scheduled to get home tonight and then we are scheduled to leave tommorrow to NY. Joey's blood tested negative the 2nd time for the HAMA, so we have to go back. We are sad about it but hopeful that he might get it soon.
It means another week of torture...but...at least he's alive and we can enjoy him. He lost a little weight again cuz we all went through a stomach virus...but other than that he's doing reaaly well. He's got a cough now. Always something to keep us worried.
Freddy started Kinder and likes it. So does Mommy. He's also doing Karate which he really likes. He's an orange belt now. Joey wants to take classes too but he's still too young. He's onlt going to turn 3 now in October. He has to wait. Although, according to him he wants to go to school and everything. If he wasn't immunocompromised I'd send him.
Anyway, we leave tommorrow. Please pray for Joey's continued healing and NO PAIN!!!!
Thank you for caring. Linny
Monday, September 16, 2002 at 09:57 PM (CDT)
Hello everyone,
So nice to be here with good news day after day. We are so very happy that Joey is doing so well and we thank God for that and for all that He has done for our beautiful boy and our family.
Joey has bee doing great. We were scheduled to go to NY this week but he tested positive for HAMA. That's a good thing. That means that his little body is producing the antibody that we go to NY to give him and thus, while his body produces it we do not have to go to NY to give it to him. That means that we don't have to leave home and he doesn't have to endure all that pain he goes through while getting it. So....yo cannot imagine how ecstatic we are!!!!
We retsted his blood on Thursday, so he had to get acessed for that because NY wants to make absolutely sure that he is producing it and if he is we don't have to go to NY. We won't have to go until he stops producing it, if he stops. So...one day at a time. We are just grateful that he doesn't have to be there this week. YAHOO!!!!
Other than that, we are busy with life and living it. Joey has been to work a few times with me in Fred's office. We are trying to help out any way we can. It's not a great idea for him to be there because it is so nice to be home and he eats more at home. So...Freddy has been going to Kindergarten and Karate. Joey also likes Karate but is too little to do it. He pretends though and Freddy teaches him stuff. Today I finally bought him his own little suit of Karate. he had wanted one and he kept asking, " Mama compra Joey." Which means...Mommy buys one for Joey. How could I refuse. He wore it today and his face glowed. I even let him roll around the mat at Karate and he really enjoyed it.
So...tommorrow we go to speech. We have to use the hearing aids more often. He will be turing 3 in October and then we hav to take speech through the public school system. So...we are always busy around here.
The Garage Sale was great!!!! Fred and I enjoyed it alot. We were there bright and early with friends and friends and Moms and friends. We so appreciate what the Moms from the Moms club have done for us. This year we actually were aware of the time and effort that goes into organizing and making this thing come to be. There is alot of work involved and we thank all the Moms that took their time from their own lives to help us out. Our words will never be enough to thank them but we know that they have a special place in God's kingdom for all they have done for us!!!! The day was beautiful...very hot...very very hot. We had a very good turnout. If you weren't there. You were missed. If you were there, thank you!!!!
Please keep posted for our next event. The Golf tournament is scheduled for November 8th at the Fort Lauderdale Country Club. Call me if you want me to fax a form to you. My number is 954 442-7805. We would also appreciate it if you could tell others about the Golf Tournament. Last year it was a great success and it got sold out. So...if you would like to be there and participate with us, give us a call but don't wait too long. We had a great time.
Also, the Sunday prior to the Golf Tournament. Sunday, Novembe 3rd there will be a mass for Joey at Our Lady of the Lakes Catholic Church in Miami Lakes at 5:30pm given by Father Murphy. We thank Javi for arranging that for us. Father Murphy has been aware and praying for Joey since his diagnosis and we are honored that he can do this for us. We have so much to be thankful for and we would love to share that day with all the people that have been praying for Joey's healing because God has been with us and gotten us through this horrible ordeal. Without our faith we would surely be broken. So...please try to be there and tell others to go a well. We welcome everybody, we don't intend for it to be a small family gathering, we really would like everybody who has prayed for Joey to be there.
Well, I'll go for now but I'll try to check in when we get the HAMA news.
Love, Linny
Saturday, August 24, 2002 at 08:37 AM (CDT)
Hi everybody,
I just wanted to let you know that we are gtting redy to come home. We are so very happy. We had a bi scare yesterday. On thursday night one of the oncologists called us at the Ronald McDonald House and said that she didn't want to scare us....OK...too late for that.....but that they had seen something on the Ct scan that showed more vesticular activity???? What???? What does that mean? Well, she said...it could be nothing but there seems to be more blood in the vessels in the front left lobe region of Joey's head and we want to check it out on an MRI tomorrow morning to rule out anything. Anything like what? Like tumour or metatisis. OK....now I'm scared. Hang on to that Faith it is nothing. They just want to make sure it's nothing. So...SIGH...we kissed him especially tender that night as he slept. We touched him tenderly and prayed with our hands on his head and declared his healing in JESUS' name and snuggled especially close to him Thursday night. We prayed and tried sleeping but didn't get too much rest. Friday morning he couldn't eat because he had to get anesthesia for it...so we waited until abou 11am which is when he went in and prayed some more. We basically hand our fears over to GOD and hope that He continues to heal Joey. That's how we get through it. When tears try to come and take over and doubt and saddness try to take over we focus on GOD and His almighty power and let go....SIGH!!! It is very humbling and just knowing it is out of our control.
We Thank God that everything is fine. It was just that,...extra blood circulating there...there is more technical terms for it but...he's fine. We are not worried the doctor is not worried and we can breathe again, hopefully for 3 months until the next scans. We did our treatment on Friday and it went really well...I think because he was somewhat more sedated and it was Friday. So...today we pack up and head home and enjoy our life!!!!
Freddy starts school on Monday, Kindergarten...I am very excited...him...I'm not sure he cares either way...I think he's excited too...Joey will start speech therapy for the next 60 days and physical therapy too I think. He has an evaluation first. So....we have a full schedule and we are not even home yet.
Don't forget the garage sale Sept 14th at the Pembroke Lakes Mall. If you would like to get involved call Dawn at (954) 392-1497.
Oh, also, if you get or can get the Sports Illustarted issue of September, it's suppose to have a story on Neuroblastoma and a little girl that is trying to raise funds for reasearch.
We love you and thank you for caring. Please continue to pray for our Joey and his healing!!! Thank You!!! Linny
Tuesday, August 20, 2002 at 09:05 PM (CDT)
Hi everybody,
I'm going to try to make this quick because we are at the Ronald McDonald House and after writting a bunch of stuff I got logged off. So...all I really need to tell you today is that God is great and Joey's scans are all clear. We thank God for his healing power and for his mercy on our family. We thank all of you for your continued prayers for our Joey and our family. We know that there is a God and we believe that He is listening. Thank you.
We continue treamtent this week so please pray that Joey does not feel pain and that it will be over soon. I will try to write more tommorrow. It gets tiring around here. Freddy is having fun and Joey too. Ronald McDonald House tries to make it fun for them and we are fortunate to be able to be here.
Please say an extra prayer for our friend Drew who is only 4 years old. He finished transplant and was about to go home when his intestines errupted and he's fighting a huge infection in the ICU. He had major surgery and they had to remove some of his intestines. So...please ask for his healing to get him through this.
Thanks for caring and praying for us. Lots of love Linny
Wednesday, August 14, 2002 at 10:47 PM (CDT)
Hi everybody,
It's kinda late but I thought I'd update everybody on what we are doing and how Joey is doing.
Well, we flew up on Tuesday, we had to go commercial. We haven't been able to get Corporate Angels lately. So...we flew Jet Blue. It was Ok. Joey hates to sit in the chair and get strapped in...so..guess what? He doesn't get strapped in. Anyway, the flight was good.
We arrived Tuesday, cleaned up our room, did some groceries because we are going to be here for 11 days and we needed to get our weekly stuff. You can only eat McDonalds for so many days...then you need some other stuff. So..after we got settled in and our groceries..there was an awesome Cowboy part in the Ronald McDonald House, which is where we are staying this time. We went down there for dinner. The food was very good although it was kind of hard to eat. We were following Freddy and Joey around. They had a game to throu a golf ball into a fish bowl and you would win the fish. Freddy really wanted that....but thank God he didn't get it cuz then we would have had to take care of the fish. Not to mention..how would we take it home. Anyway, there was bandana decorating and country dancing. It was alot of fun. Freddy wanted me to dance with him and we learned alot of moves. Joey danced with us for a little while and then would want to stop. The night ended late and we went to the room pretty late, well for us, like at around 9:30, took showers and went to bed.
Today we had to start the day early because Joey couldn't eat after like 9:00am because he had to be sedated today for the bone scan. So...we got to clinic, they hooked him up to the IV and we stayed in the playroom until it was time to get sedated. It worked out pretty well. He asked for food a few times but I told him nobody could eat and he was OK with it. He's a great baby.
So at sbout 11am he got an injection of a dye they use for the bone scan and then at 2:00pm they did the bone scan. We won't have the resuslts for awhile but I will let you know as sson as I do.
When we finished the bone scan we then had to put a bag around his pipi to collect urine for 24 hours. So...that's very uncomforable and he didn't like that at all. He cried for a while until he fell asleep practically.
He's wearing that pipi bag right now. Oh the things we take for granted.
Tommorrow is the bone marrow aspirations and the CT scan. So tommorrow he cannot eat until he's done with everything. He'll also be in some pain from the aspirations.
We'll keep you posted with any new develpments/. I am very tired. Please pray specifically that all of Joey's scans come out without any disease at all and for his continued healing!!!!
Thank You for caring. We really appreciate it!!!!
Friday, August 09, 2002 at 10:41 PM (CDT)
HI everbody!!!! WOW!!!! I haven't written in a while because....THANK GOD!!!!! Everything has been pretty normal. We are sooooooo ecstatic that things have seemed a bit normal around the house. We've had occasional doctor visits, a little bit of medications to be given, an occasional blood drawn to check that everything is OK...but other than that...LIFE IS GREAT!!!!!
Well, we did have to get a little mole removed from his chest. He had a mole that I hadn't noticed before that had grown and it was black. I thought it was unusual and we had shown it to his Drs. in NY. Their comment was, it didn't look like much but... it was better in the trash than on his body. So... they suggested I take him to a dermatologist and probably remove it. If the dermatologists thought so. The dermatologist took one look at it and said, "Oh..it's black..we don't like black." So...they gave him local anesthetic and they shaved it off. Then they had to dig a little deeper because it was a little deeper and that was it. Joey wasn't too happy about that but...it's off his body. They were doing a biopsy on is and the results should be in..but the Drs haven't called me back with the resuls yet. Y'know how that is...so I've been calling them already and leaving messages. I WILL have a response before we leave to NY on Tuesday.
So..what else...Joey has hearing aids that he uses sometimes and sometimes he gets sick of them and rips them out of his ear and I'll find them somewhere lying on the floor..or I'll notice they are not on his ear and ask him where he put them and he'll just shrug. Sometimes he doesn't notice them on and then other times he says yucky and doesn't want them on. So..we are working on that.
He runs around the house ALOT playing with his brother. He tries to intimidate Freddy by going after him to hit him. Poor Freddy knows he's not suppose to hi Joey so Joey goes after Freddy and Freddy comes next to me so I won't let Joey hit him. It's kind of messed up but...whatever. He's having a good time playing with his brother. Lately he wants to sleep with his "Sheddy" That's what he calls Freddy.
Freddy is also having a good time. We signed him up for Karate classes. I figured he could get the screaming and aggressiveness out in class....and he absolutely LOVES it. He started July 8th and he's already going to test for his next color belt. I am so very proud of him and happy that he gets to do some normal kid stuff!!!! We've been trying to get stuff ready for school. He's got his uniforms and things ready for Kindergarten. I am ecstatic because unlike PreK 4, he'll be in school for a few more hours which gives me time to get moe stuff done. There are never enough hours in the day.!!!
Joey will be starting Speech therapy soon and Physical Therapy too to get him more agile since he was in the hospital last year so long. He's fallen behind a little on normal movement stuff that I think he could be doing better like climbing stuff and running...so that stuff we will be doing when we get back from NY. His schedule will also be busy. We also have to get a few more Drs involved, like the Eye Dr., a nutritionist and an ENT specialist to mke sure that his hearing deficit is absolutely from the chemo drugs and not some other type of problem. So...we still have some more Dr visits when we get back, but nothing we can't handle. It is absolutely Nothing compared to what this child has gone through. So...bring it on!!!!God will lead us through this!!!!!
We will be leaving to NY on the 13th of Aug and we wil be returning around the 24th. The first week Joey will be doing all his 3 month scans; MIBG, CT, Bone Marrow aspirations, Bone scan and then the following week he will be doing the 3F8 treatment. So...we have a long stay...we are not looking forward to it to say the least...but we hope and pray and we please ask that you pray too for Joey's clean scans and tests and the God continues to heal Joey and keep him Cancer free.!!! We know that Joey is a gift from God and only God will determine his stay here on earth with us as He will determine all of our fates...but we desire and ask God to allow us to have Joey for many many more years to share his life and happiness here with us and we ask that you pray for that as well!!!!
On another note....the Pembroke Pines Moms Club is going to have the 2nd Annual Garage Sale to benefit Joey and Families Fighting Neuroblastoma. It will be on Sept. 14th at the Pembroke Lakes Mall parking lot, on the side of Burdines and it will be from 8am to 2pm on Sept. 14th.
If you'd like to get involved there are many ways that you can.
1. You can get a spot to sell your own stuff.
2. You can share a spot with someone to sell your stuff.
3. You can collect items to sell and take them to Dawn on or after Sept. 7th for the Moms club to sell.
4. You can go to the sale on Sept. 14th and buy stuff.
5. You can tell as many friends and family about the sale and take them with you or invite them to go to buy stuff with you.
6. You can pring flyers with the date and time of the sale and distribute them or place them in your work area or places you frequent to tell others about the sale.
Dawn Garber is the wonderful lady who is in charge of the Garage Sale. She can be contacted at (954) 392-1497 or her email is Dgarber4@hotmail.com
Last year was a Great Success and I know this year the Moms Club wants to surpass last year,,....so...please help us do that!!!!! Come out and show your support for Joey and for a great Cause!!!! We hope to be there this year, right alongside with everybody else and hopefully Joey will be there to say Hi as well and thank you for comin out!!!! We hope to see you and your friends there. Remember to spread the word!!!!
I'll keep you posted on the results of the scans over the next couple of weeks so be sure to stop back in and say hi in the guest book we enjoy seeing your posts and reading them. It doesn't matter if you write a million times, the more he better, that way we know you are checking in on us. Thanks again for keeping us and especially Joey in your prayers!!!! Love, Liny
Saturday, July 20, 2002 at 09:26 PM (CDT)
Hello freinds and family.
We are finally home today. We are so happy to be home. I can't express how nice it is to leave that city behind us. Remember I told you that going to NY is like a big stress ball? Well, Fred and I sighed as soon as we were in the cab heading to the airport for our return flight.
Joey did OK. He had pain, but I guess that's expected. We just tend to forget what it's like. Thursday he cried for about 2 hours after we got out of the hospital, just because the meds make him crazy and we don't know how to help him. He kind of says he's hurting but then maost of the time he's just very irritable. Sort of like a cholicky baby, but it's not colics and...it's just unexplainable. Fred and I just want to curl up and shrink until he feels better. It's almost like, we can't talk or say anything because he gets really mad and crying. He directs where we have to stand, we can't sit because he gets mad. It's very stressing. We try to accommodate his wishes to make him as comfortable as possible, but it's still very hard because sometime his requests aren't possible. He wants us to carry him for looooooong periods of time standing and we can withstand it for a while, for a long while but then you get to a point where his weight and your arms can't hold him any more and you want to sit down and he's like a radar. He senses your body moving down, and we try to do it oh so slowly so he won't notice...but he does. It's just really unexplainable. You might think it's cuz he's spoiled...believe us...he is but that's besided the point. This medicine stuff and this treatment is harsh!!!!
This time we had a boy with us in the same room who was 17 years old. That's pretty uncommon for Neuroblastoma, most kids are little like Joey, a little younger or a little older, but this kid was 17, he was diagnosed at 14 and he relapsed and is doing treatment now at Sloan and he was crying from the pain. So...although Joey can't really express himself that well, he still tells us it hurts and it's very nerve wrecking to see your child go through that day after day after day....the SIGH only thing that keeps us going is that we know that God is with him and that we have to keep going and we are soooo thankful that we have him to go through this with him. Many kids already can't even do the treatment because they are not here to be able to do it. So... I have to be greatful that he can at least go through the treatment although it's very painful for him.
We are scheduled to go back mid August. Next time we will be there longer because he will also have his 3 month scans. So we expect to be there 2 weeks in August. He wil start his 3rd round of accutane on Monday and that will be for 2 weeks. He will rest a week and then back to NY. He has a bit of a cold now so we have our fingers crossed that a fever does not develop and we don't have to take him to the hospital. Please continue to keep Joey in your prayers and thank you for caring about us. Thank you God that we are all home!!!!
Monday, July 15, 2002 at 06:17 PM (CDT)
Hello everybody,
I hope you are here because you are thinking about us being up here in NY. This is a great way to keep in touc with friends and family, by telling everybody at the same time what's going on.
We flew up to NY on Sunday morning. We tried to get a flight with Corporate Angels but unfortunately w have't been able to get on with them the last 2 times. It really makes you appreciate them when you can't use them. You basically fly alone with them and on the commercial flights we are on the plane with so many people for over 3 hours and you just don't know who can have what. So...we hope and pray we will be able to fly with Corporate Angels again. Anyway, the flight was a little nerve wrecking cuz Joey didn't want to sit in his chair, not even for take off and landing and the stewardess was not very nice about it. I think she might have woken up on the wrong side of the bed that morning. She just insisted he sit in his chair. Anyway, I tried to sit him but he screamed bloody murder and, I'm sorry, I took him out. I know I rewarded him but...people, you have to understand that this child has cried so much in his little life that if I can spare him some tears,...I'm going to and I'm sorry for anybody that disagrees. I mean, I know I don't want a rampant brat running around but...some things I'm just not going to fight him on. HE WINS!!!! Anyway, that brought on some stressful words between Fred and I. Our flights up here are always a BIG BALL OF STRESS wrapped up in a tight wad!!!! We tense up from the day before we have to leave until we hit the ground in FLorida. It's a very strange and unsual stress that Most families just don't have to endure and it's hard on a relationship. But...thankfully we kind of talked it through in the cab ride to Manhattan an decided that next time we'll bring his car seat and then we'll enforce him sitting in the chair and that he's used to. I think he'll comply better with that. Anyway, that was the flight. Then we were pleasantly surprised when we arrived at our hote. We used a program this time called Home away from Home for families like us that have a sick child and need treatment. We are staying in a Westin Hotel that works with the American Cancer Society and they give us 5 free days at the hotel. It's very nice and of course luxurious...but you know, YOU KNOW!!!! we'd much rather be home. It's a nice change though from the Ronald McDonald House. It's much cleaner and they make the rooms here. The only thing is that they don't have activities for Freddy. Freddy of course,is with us!!! We ALWAYS bring him with us. We like being together. We'll always try to stay together for as long as God permits us. The hotel is across from Central Park and very close to Time Square, so there's alot to do around here.
Last night we ate at Hard Rock Cafe just the 4 of us and walked around a little bit to get familiar with this part of town. We always have to find a pharmacy and a grocery store and of course, a McDonalds and eating places. It's kind of hard to eat our every day but...we are kind ofused to that. Joey got sick last night though. We were very scared. He didn't have a fever or anything. He had been asleep for a few hours and at around 1am he started throwing up in bed. He threw up a total of 4 times. We were very scared he would get dehydrated and we called the clinic to see what we should do. They told us just to watch him and bring him in if he continued to throw up, but thank God he didn't!!!!! He slept til morning and then, not another sign of throwing up. He didn't eat much this morning, just half a donut and water. Then at about 11am we hooked him up and he started his treatment. He hates to go into the treatment room. He's OK coming into the building and he recognizes the playroom right away, he's even friendly in the morning. But...once you start walking him towards the back where he gets hooked up...he cries and doesn't want to go. He had pretty much pain today. It started early and we were caught off guard. We usually don't anticipate pain so early...so we kind of chased the pain today and he did not have a good day. It's almost 8pm and he's still sleeping off the pain medications that make him psychotic. He cried yaya alot today. That it hurt. You just never get used to seeing your child gro through this crap. That's what I have to call it. Y'know, as we we driving to the hotel I thought to myself...no matter how normal you try to be back home...this is unnatural. Nobody really knows our lives...only the parents that actually have to be here and do this know. Not even he closest people in our lives, like our parents...although we tell them and they know our daily stories...it's just really unexplicable. It's the worst thing in life to see you child here. I know there are other children going through worse than Joey and that gives me hope and I know I have to go on and be strong for him and live every moment as best we can for him and give him the best life he can have for as long as God determines. Life is really health and family!!!! That's it people...forget about the rest of the little things. You dwell on the little things because everything else in your life is good. Well,,,then...thank GOD!!!! That's it. Please pray that Joey has a better day tommorrow, without pain!!!! Please continue to pray for his complete healing. I'll keep you posted. Thanks for checking in!!! Love, Linny
Wednesday, July 10, 2002 at 10:39 PM (CDT)
Hello everybody,
Joey is doing fine. We are on break from Accutane and waiting to go to NY this weekend. We are due back for or 3F8 treatment (the immunotherapy) next week. He has not developed HAMA yet. He's bee running around having a great time at home. We Thank God for every minute he has here with us. He is an angel of a child. We got some new hearing aids. He's not to excited about wearig them. He says "yucky" "yaya" which means ouch, it hurts. I don't think it hurts, I think it just bothers having something in the ear. They are not too big but not too small. And because he still has such little hair, but hair we are very greatful for!!!! They kind of stick out and are visible. But, you know, with what this child has been through, that's like....so what? Hearing aids....HA!!!!! That is not a problem. He has worn them for a little while, then I'll find him quitely somewhere without them in his ears. That's OK though, we'll work on getting them on him more and more every day. He hears somewhat but this will help him hear some higher pitched sounds he may be missing.
Anyway, we are a little worried and saddened today. We had news that our little friend Julia, who is 3 has relapsed. She was one of the little friends that was hand in hand with Joey during treatment. They are both on the same protocol and of course, you wish that his one would be the one that could cure them. But,...unfortnately, it hasn't cured all the kids on it. We hope and pray for the best but weknow that only God determines Joey's future and ours and we declare his healing, in Jesus' name and hope and pray that everyting will continue to go well. Of course, now every little bruise and every little worry is greater after you hear new like that...and so saddened or her to have to go through more treatment. The parents are crushed and I can't imagine what they are going through. Even after all the common things we have gone through, believe me....you do not know until you are there. We can't even pretend to know. We pray and ask for your prayers for Julia as well as Joey for their healing. Thank you for caring about our family and give your kids and extra big hug today!!!! Love, Linny
Sunday, July 07, 2002 at 10:23 PM (CDT)
Hello friends and family,
It's been about 2 or 3 weeks since we last updated so I thought it was time again. You will be happy to know that no news is good news. We have been trying to have a normal life around here. We are happy to report that life is starting to feel somewhat normal. We are doing all the normal things families are suppose to do. We try to go to the movies, drive thru that is...we do some grocery shopping and go to some stores rather quickly and at not so busy times...we eat out in places that you can eat outdoors..and we just got back from the Keys for
July 4th.!!! Joey and Freddy saw fireworks and Joey clapped and got excited when he saw them. Freddy thought it was great until he had had enough and said,"Can we go home now?" But...all in all, it was a great time. We tried to be realy careful with the sun because of the Accutane medicine he's taking but he did well. We were able to take him out on the BOAT which is Joey's obsession and Freddy has become expert fisherman!!!! He caugh quite a few fish off the back of the house in the canal... some grunts...some snappers, a yellow tail. We threw them back in cuz we didn't want to cut them up to eat them. Joey had a great time riding the boat!!!! He say's "GO, GO, GO" Then..he falls asleep with the wind and the noise of the engine. Freddy likes Daddy to go fast. Mommy and Daddy enjoyed the peacefulness, well, somewhat peacefulness, you know what it's like with 2 boys. It was nice to have a change of scenery and some fresh air. We THANK GOD for all that He allowed us to enjoy!!!!Especially seeing our 2 sons laughing and playing and having a good time!!!!Thank You Jesus!!!
We are due back in NY on the week of the 15th of more Immunotherapy. Hopefully, with God's grace it will go well for Joey with minimal pain. We continue to pray for his healing and absolute health!!! We give thanks to God for all the moments He allows us to love Joey and enjoy his company!! He is a unique loving angel child!!! The way he pats his brother and says, No cry. The way he gets concerned if someone else is hurt and lovingly says, Mama YAYA? Which means, Do I have a BooBoo? He is so loving. Don't get me wrong, he also has a bad temper and little patience. Like when he says.....MAMA!!!! Like listen, right now!!!!With attitude, I might add. But he really is a very loving child that keeps pointing out to me...Joey like Daddy!!!OK....what about Mommy? Freddy like Mommy. OK. What could you do? That's the way he likes it.
We are going to get his hearing tested again tommorrow. His hearing aids are suppose to come in on Tuesday and good luck on getting him to wear them. Let's see what creative fiasco I'm going to have to come up with the gethim to wear those things. Maybe I can slip them on while he's sleeping and he won't notice when he wakes up that theres a thing sitting on his ears!!!! Maybe I can buy him a candy ever day he wears them. Then we'll fix his ears and he'll have terrible teeth. So....there, you see my friends...these are our problems that we are dealing with now and we are happy that they are so miniscule in size.!!! So...you have problems?...?....? Always think,...I read this somewhere....You have problems? Compared to what?
We hope you had a wonderful 4th of July as we give all praise to God that we did!!!!Hope this finds you with health and happiness!!!! God Bless you, thank you for stopping in and thank you for you continued prayers lifting Joey to God for health and healing!!!!!
Sunday, June 16, 2002 at 09:58 PM (CDT)
Hi everybody,
We are glad to be back home. We just spent a week in NY again for Joey's 3F8 treatments. That's the Immunotherapy. We have to do that a week out of every month. It went OK. I mean, I guess it went pretty well. It is going better than it use to be but it's still very difficult. I think that everything is relative though, thinking back at what he's been through it prabably isn't really a great big deal but as time goes by and things seem more normal, going back there and doing that treatment seems really bad anyway. He got pain much later during the infusion, which is good but yet, the time he's getting the pain and we give him the pain meds seems bery long. I get all tense and emotional having to go back up there. It's like a stress ball. He get's pain meds during the treatment and he just gets really irritable and he kind of swells up in his face, his eyes and mouth especially. They give him alot of fluids too through the IV so he's getting all that stuff. Sometimes I think he pushes and cries and hurts so much that he gets swollen up. I guess the best way I can explain it is...you know how when a woman gives birth and all that screaming and pushing and pain that they go through makes them all swollen and their nose gets really fat and their eyes are kind of shut and unrecognizable???? Well,...it's kind of like that. It's like a HUGE stomach cramp that he wriggles and cries and tells me Mommy Yaya for a good half an hour sometimes and there's really nothing I can do but hold him and talk to him and try to make him comfortable, but really nothing works. The pain med work but it sometimes takes a little while to take effect of sometimes the pain just gets less but he still feels it and cries....Sigh....but that's what we go through when we are there. Then he kind of dozes?? in and out of sleep with little cries as if he's kind of remembering the pain. Then, he's kind of like drugged and confused and if he opens his eyes and sees me he cries and wants Daddy but once Daddy gets near him he cries and says no and wants Mommy and he's kind of like psychotic...he really doesn't know what he wants but he just keeps crying and it breaks your heart to not be able to fix it immediately for him. So....it's a tough couple of days but....what can we do? We have to do it. I guess the best way I've learned to deal with it is to think that although this stuff hurts him and just seems barbaric....not doing him is letting him die. And....we won't allow that. God is working miracles in his little life and has granted us all this time with him to enjoy him. We thank God for that!!!! Especially on a day like today..Father's Day...what a wonderful day we had!!!! Fred went to Mass with Freddy while Joey and I waited playing in the car and reading and watching a movie and then we attempted breakfast at a restaurant but ended up just getting drive through stuff. Then we went to pick out a BBQ that Daddy wanted for Father's Day and we all went together and we came home for a little while, we saw the abuelitos, that's grandfathers and we came home and had a BBQ at about 7pm outside, the kids played on the swings, we took some pictures and it was GREAT!!!!! It really felt like...this is what it's about!!!!! How fortunate we are to have out family!!!!
We hope that you all had great days as well and we thank you for caring about us and for praying for Joey. Please always keep him in your prayers so that God knows that we give all praise to Him for allowing us to keep Joey. God doesn't want us to forget Him in anything we say or do and we want to be witnesses of that. We know that nothing is possible without Him and we give all praise and glory to God!!!!
Joey will start his 2nd round of Accutane for the next 2 weeks. That hasn't been that bad, he peels a little, we have to put lotion on him several times a day and on his lips as well because they chap and peel but other than that, thank God it hasn't been that bad, hopefully every round will be OK. We'll see, some say every round is different. We have 6 in total and we've already finished 1...so...5 more to go. He takes the Accutane 2x a day, morning and night for 14 days and then,....he gets a week of rest and then we are due back to NY for more 3F8's (Immunotherapy). So...we are looking at about July 15th...that week we are due back.
Freddy is doing great...he finished Pre-K 4 and is on Summer vacation already. He had a great year, we thank God for that.!!! He had a great caring teacher (teachers) and it really helped him have fun and have more of a normal life. We are hoping to start swimming classes and maybe Karate as well during the Summer and then....Kindergarten...next year. We can't wait.!!!He is very handsome and very bright and we adore our children!!!
That's it folks. It's been a long entry so...I'll update more as more develops. Oh we're working on Joey's hearing aids and speech therapy also as we found out that he does have moderate hearing loss, but I think he hears pretty good...but better safe than sorry...we are starting procedures so that he can hear better and not fall behind.
God bless you and your families and make up with everybody...life is too short people..you have it all!!! Love, Linny
Thursday, June 06, 2002 at 10:25 PM (CDT)
Hello friends!!!!
It's been a while since my last update...that's good sign!!! We are presently in FL. We are enjoying as close to a normal life as we've had in a very loooooong time. Joey, thank God is doing fine. He finished his oral chemo...for those of you who don't read the journal all the time. Hopefully, God willing, Joey has seen the last chemo he will ever need in his life. We hope and pray that to be true!!! Right now he is taking Accutane, which is a pill that he needs to take, twice a day for 14 days. He then gets a week break, and then we have to travel to NY for immunotherapy (antibodies or 3 F8's) They all mean the same thing. Why in NY you ask? Because it is the only place in the country that can administer it because Dr. Cheung, one of the oncologists at Sloan invented it and it is under his supervision. It is still in the testing phases and is proving to be effective against residual disease.
As you my know, we are very greatful to God that all of Joey's scans came back good the last time we were in NY!!!!! We can't ask for more. We live day to day thanking God for one more day with our precious Joey. What a little guy, he's something else, I hope that many of you will have the oportunity to see him and interact with him. He is a loving boy that has so much to give.
Today is a special day. Today is a year from the day of Joey's stem cell transplant. Last year today Joey had his stem cells reinfused into his little body. It is a day I would like to forget, but unfortunately I have vivid memories of those days that perhaps will stay with me forever. On the other hand, it was the day that he was given a second chance at life with better cells. With God's help our Joey will live a long life and we will have the opportunity and pleasure to see him grow. We do not know what the future holds for us for Joey or for anyone for that matter but I can tell you this....we are so happy to be where we are today with both our children in our home. We thank God for his Mercy and we thank you our friends for carng about Joey and for keeping him in your prayers. We know that God is listening and is giving us the joy of enjoying him, enjoying both of our sons, seeing them play and fight and take showers together and takin pictures together and hugging and holding hands and fighting. We thank God for those pleasures that we feel very fortunte we can witness.
Please take a look at the updated pictures. They look very cute...if I can say so myself... and continue to pray for our family as we need all your prayers. Thank you and God bless you and Happy birthday my beautiful baby boy Joey!!!!
Love, Linny
Sunday, May 19, 2002 at 10:13 PM (CDT)
Hello friends. We are back in our home. We are sooooo happy to be home. There's really nothing like home. Anyway, the kids are very happy too. Joey's been laughing ad playing and dancing around. He has a little song about coming back home. We started doing it when they would let us out of the hospital after like a week after the chemo's "Vamos para la caaaasa" He snaps his fingers and everything.
Anyway, if you didn't read the prior post, all the test have come back good, clear, normal. We are only waiting on the bone scan results because that test was done later. But, with God's help we expect it to be clear as well. We start Accutane tommorrow and I'm a bit nervous. It really shouldn't be a big deal after all we've been through and all he's taken, but I guess it's the thought of something new and doing it new and not knowing really what effect it will have on him. The accutane comes in a pill form. It's about the size of a fat tictac and it's like a gel pill. If I can gethim to swallow it, that would be the best thing, otherwise I have to squeeze the contents out into something so tat he'll swallow it and that'll be twice a day for 14 days. Then he rests for a week and then we head back to NY. So, we are due back about the 10th of June in NY again. The accutane will probably crack his skin and his lips so I have to put a lot of lotion on him everyday and keep him out of the sun as well as bathe him with Dove moistourizing soup and put sunblock on him and a hat to take him out. I'm not looking forward to it. He can also, aside from the peeling cracking, bleeding skin issues, he can get more irritable, he may get headaches, older children can get headaches and get depressed and suicidal. I don't think that will apply to him but,,,, nonetheless..I hate not knowing how it will affect him. So....please help me pray that it will go well for him and that he willhave no or minimal side effects.
On the positive side I think his hair can now grow. The accutane is not suppose to make his hair fall out...so....maybe, for the first time since he was 1 year old I may get to see his head with beautiful hair. For all of you out there that are reading this....know this...I will let his hair grow like a girl, I have not seen his hair so now I am going to seek revenge and let it grow as long as I or he can tolerate.
We also have an appointment tommorrow for his hearing test. We need to get him those hearing aids as soon as possible so that his speech is not hindered. So...Freddy starts school tommorrow and is happy about that. We will celebrate his birthday on Wenesday with cupcakes at school and plan for some birthday party with his cousins and a few little friends for after Memorial. His birthday fell on the 15th and we were in NY so now we have to make it up.
Oh, by the way, today Fred and I had our 12th year wedding anniversary and we were able to sped some nice time together. My Mom took care of the kids. It was very nice. It's been a very long time since we've done anything nice together just the 2 of us. So....I'll fill you in in a few days how the accutane is going. On Thursday we have to draw some blood to check some levels, like of calcium and a few more things that the accutane affects to see if everything is OK. After that, I really don't have to go to the clinic so often any more because they really don't have to chck his counts as much because he wo't be taking chemo anymore, God willing, and thats what would affect his blood counts. So... I'm looking forward to going less and less to the clinic. Maybe never, one day. So, thank you for all your prayers always. Linny
Thursday, May 16, 2002 at 05:13 PM (CDT)
Hello everybody. Joey is sleeping. He's been sleeping for awhile. He's doing fine and great but today was a bit rough. We had to be out of the room by about 7:45 am because he had to get started early at the clinic. He had to get through his treatment before 11:20 which was when he had to get an injection for te bone scan he had to have at 2:00. The whole time he had to be "NPO" which means he couldn't eat from 8:00am on until after the scan. We got him up early so at least he could have some brakfast. The morning went well. His 3F8 treatment has gone exceptionally well. He's had considerably much less pain with the new way we are giving him the pain medication but....when he finished at about 11:00am and woke up and asked for water and food and we couldn't give it to him it was horrendous. We have heard him crying pretty much for those 3 hours until they sedated him again for the scan. It really broke my heart to hear him ask for water and we couldn't even give him that. Don't these people thin these kids go throuh enough to keep him from eating so long? We've complained before but nobody is listening and after the thing is done nd they tell you everything turned out fine, you ind of forget until the next time. This time was especially difficult because he had the treatment and the medication that makes him psychotic anyway, and then add to that that he couldn't eat or drink and SIGH he cried alot and screamed alot. One of the doctors who has a very twisted sense of humor said, at least we know he has good lungs. Meaning he heard his screams. Next time if it doesn't change I'm going to let him hear it longer. Of course, they don't have to take care of the screaming hungry child and the probably don't even hear them because the parents get embarrassed and try to walk the child around or find where they could go so no one hers them. But....I think that needs to change. Everybody needs to hear the kids so they understand that the scans cannot ad should not be that late in the day. It is almost 7:00pm and hes sleeping from the last sedation and hasn't been able to eat since breakfast today. We are going to make a petition and write a letter so that maybe something can get done. It's really vry hard. I cried today because it just kind of breaks you down, all the crying and stress. It's enough what they are going through to add uneeded stress. Anyway, enough of that. He's doing well and basicall that's the most important thing!!!! We will be waiting for the results to today's bone scan, but we expect it to all be good and clear with God's help. It will probably be a few days before we know. He has tommorrow left of the treatment. I know it should be better because he'll be able to eat. Then, hopefully we are headed back home on Saturday. We are soooooooo ready to go home. It's been a bit more pleasant here but, we want to go home. Freddy's having a pretty good time. He was a busy boy yesterday for his birthday. He went to Toys R Us in Time Square, we cut him a birthday cake and we went to a play called FROGZ which he really enjoyed alot. So did I. Right now he's at Central Park with his Dad and he had his face drawn by a park artist. It'll be a nice memory of his 5th birthday in NY. So...thanks for checking in. Please continue your prayers as we know that God is listening to them!!!!!
Tuesday, May 14, 2002 at 08:26 PM (CDT)
Hello everybody. I'm going to try to keep this short because I just typed a bunch of stuff and then...erased it. So....just want you to know that 3 tests came back CLEAR and we are very happy and thankful to GOD!!!! We only have 1 last test left on Thursday but we are confident that it will also be good!!!! Joey is doing great an tommorrow is a very exciting day as it is Freddy's 5th birthday and we are hoping to have some fun. Joey still has treatment tommorrow but we are working around it so that Freddy could have a good time. Thanks for your prayers and please keep praying for Joey's tests to be clear and for his continued complete healing!!!! Thanks, Linny
Thursday, May 09, 2002 at 03:40 PM (CDT)
Hello everone. We are presently in NY. We had a great time getting here. We drove up to Tampa on Monday night because our Corporate Angel flight was leaving out o Tampa. We save pretty much money flying with them so itmade sense to drive there. Anyway, we don't get out much so we like to do anything!!! So...we drove up on Monday night. The kids pretty much slept most of the way, which also worked out because Fred and I barely have time to talk at home wit work and the kids, we are usually exhausted at night, so we had some nice time to talk all the way to Tampa. Then, on Tuesday we flew out of Tampa at about 4pm. We were vey surprised when the person who owned the airplane we were flying on came out to say hello and tell us to have a great flight. It turns out the man was Eddy DeBartolo, the former owner of the San Francisco 49ers. Unbelievable. He was so very nice. He left oabout 4 packages full of toys for the kids on the plane. He even bought stuff for Freddy because he didn't want him to feel left out. These flights are really unbelievable. They serve us food on a table wth nice plates and silverware. They give the kids pasta and chiken nuggets. They really make it special. The pilots were also very nice. They allowed Fred, the Dad, to sit in the cockpit to watch the landing. The plane was beautiful. It's those little things, well, not really little, but the caring people that don't really even know us that do such nice things like that that make things for us more bearable. The kids had a great time playing with all the stuff. It looked like Christmas!!! That is why our kids have a lot of toys too, OK? None of the toys were repeated. That was pretty unbelievabl initself.
Then, when we arrived in NY they had a van rady to bring us into the city. I don't know if I mentioned it before in the recent journal postings but we didn't stay at the Ronald McDonald House this time around because there was a chicken pox outbreak and we were scared to exspose Joey to that. They told us that was one thing Joey could not and should not get because it could potentially be fatal. So...although it may have been OK, we decided not to stay there. Now again, we were fortunate that Carmen, our cousin (well, married to Moe, Fred's cousin), we were able to get a discounted rate at the Hilton, so we are feeling very special and fortunate. When we get to this beautiful hotel and get the our room, there's MORE toys waiting for us from the Hotel manager at the Hilton. The kids just don't know what to do anymore. They have so much stuff we are probably going to have to ship the toys home.
Now, to of course the important stuff. Joey is doing fine. We really haven't much to do. We had a CT scan done on Wednesday and a bone marrow aspiration. Joey seems to be doing fine. No sign of pain or anything. He really is doing great. Of course he hated it when they had to access his port, but other than that he's been fine. After the bone marrow aspirations he was a little cranky from the sedation and maybe the sites were a little uncomfortable so we gave him Tylenol. Today, Thursday all we did was stick around the hotel, the room that is, and then around noon we went to the hospital to get an unjection he needed through his port, the MIBG injection for the scan he's going to have tommorrow. The MIBG scan. That's the one that lights up the Neuroblastoma if there is any. So... for now, we are fine and happy and just waiting for the rest of the tests and next week treatment. Next week is also Freddy's birthday, we'd like to take him somewhere special that day. Joey will be in treatment so only one of us will be able to go but at least he'll have fun.
Hopefully we cn see some stuff around the city. It's been kind o cold today. Keep sending us your prayers, we truely belieave that God is listening to all the people that love him and want to see him healed!!! Thanks for your support. Thanks for your prayers. Please pray that all his tests come back clear!!!! Thank you. Linny
Friday, May 03, 2002 at 11:10 PM (CDT)
Hello everyone. We are all doing fine. Joey is doing Great!!!! We went to clinic on Thursday and all his counts are very good.!! He has 2 days left of the oral chemo and hopefully never again for the rest of his life. Godwilling!!! We are scheduled to go to NY again on May 7th through the 18th. The firs week Joey has all the 3 month scans to make sure the Cancer is away and has nt returned. We are confident that it has not. We know that God is healing him and he will be clear again. (It's still really scary). Then, the next week he has the Immunotherapy treatment. I hope this time the pain can be conrolled better. Last time was a little horrific. You would think it would get easier with time. Someimes I think it seems harder because we are getting used to not having to be at the clinic all the time and then when you go....you have to dive back in.
Anyway, we cannot complain. He is doing well and having fun running around his yard, playing with his Sheddy (that's what he calls Freddy). He has been able to at least go out on the boat which he absolutely LOVES!!!!! It's one place we can take him and not worry that he will get sick.
There's a chicken pox outbreak in the clinic in NY so we are a little worried about that too, but they asure us it should be safe....Let's hope they are right. Chicken pox could be potentially fatal to an immunosupressed child. BUT>>>> that is not going to happen to Joey, So....we are trying to have some fun before it's time to go,. We try to make the most of every day, for that is all the Lord provides.
Thanx for checking in. Oh, the garage sale in Hialeah was very successful and we had a lot of fun. Alot of work, but alot of fun. Thanx to everybody that helped or went by to see us. I'm not sure what's planned for the next fundraiser but..we'll let you know as soon as we do. Probably the golf tournament in October. We'll keep you posted. I'll try to let you know how the scans come out as soon as we find out. Thanx for caring!!!
Please continue your prayers for Joey and all his little friends!!!! Love, Linny
Sunday, April 21, 2002 at 09:20 PM (CDT)
Please say a special prayer for our little friend Cameron. He was 3 1/2 years old and he passed away last night. His parent Kris and Kevin also need a special prayer. Thanx.
Tuesday, April 16, 2002 at 10:01 PM (CDT)
Well, hello evreyone. It's been about 2 weeks since I last wrote. I thought it was time to let you all know how Joey is doing. He's doing absolutley GREAT!!!!I thank GOD for that!!!!He had the rotovius again when we got back from NY and he only had it for about a week...which was incredible considering last time he had it for months....He got over it and Freddy, the baby Freddy ot it also for a few days but he shook t off quckly too. Then all of a sudden Joey started eating upa storm. He's put on a little weight and looks very cute. We had to susped giving him the chemo until he got overthe rotovirus so we just started him on the oral chemo on Monday. He has to take that or 21 days, morning, lunch and dinner. 3 times a day. I mix it with some strawberry syrup so it doesn't taste so bad. He's on day 2 today and already I notice that he' been touching his mouth more and sucking on his T-shirts as if his mouth taste something funny. I cannot express to you how much I want to be over and done witht that. The day before I hd to start, on Sunday I was so apprehensive. I just hate giving it to him. Especially when I see him doing so well. But...I know that this disease is very deceptive and he needs to take it. The doctors definitely know more than I and they say he has to take it...so..he has to take it. I have to ontinue to feel like it is curing him not harming him..although it kind of does...but it's really to cure him. Ok now I'm sounding delirious....I don't know if you understand me or not but I'm just venting and this is where I do it.
So...on Monday we had his hearing tested because some of the chemo he's had could make him loose his hearing and he has to get it checked. At NY the tesing they've done for him has always been non-conclusive. They always had some tye of excuse...like he wasn't complaint or the things that go in his ears were too small...to big...so...I decided we would do it here in FL and see if they gt some definitive answers. Well....they did. They had to sedate him, because he will not go in the sound proof room they wan him to go in...and they fund that he has MODERATE hearing loss. Nothing a mother wants o hear but...really,,,after you hear your kid has cancer....nothing again will ever phase me like that!!!!! So...he has moderate hearing loss we can deal wth that. He can hear speech within about 3 feet of him. If you get to far away from him he may not know where the noise is coming from or what is being said. The audiologist wants to perform more tests on him to pinpoint exactly what he can and cannot hear. She doesn't feel that he feels a hearing aid at this particular moment until she does more tsting and see how he reacts. We'll see.
Other than that, we are all doing fairly well. I am trapped at home still because Joey cannot go anywhere and be around people that might get him sick. He will be a year out of transplant in June and then I think they may, MAY, start to give him his immnizations again and then... we'll see. We just have to take a day at a time around here and not get too cocky. Just appreciate the day God gives us and Joey and enjoy it!!!! Some days...I have to say I start to loose focus of that. I start to get wrapped up in the house and the yard and I want to do this and that and then I think. So what if my yard looks bad? What is a yard anyway? If we were in the hospital...I wouldn't be thinking about my yard. It could become dirt for all I care. It's funy how life just wraps you up in all that material stuff. You start to think...what else is there? Life,...enjoy life and people. Especially those closest to you. Spend time with the people you love...even if it is in an ugly backyard. Who cares?
Ok on to other stuff. We are havng another garage fundraiser sale on April 27th and 28th, thats Saturday and Sunday from 8 am until people stop coming at Cari's house. For those of you who don't know where that is...that's Fred's aunts house which is across from his parents house. The address is 8390 W. 18th Lane Drive. That's on 84th street in Hialeah past 16th Ave. It's a huge corner house. We will be there and we hope to see you there, even if it's for a quick hi and a small chat. We'd love to see you. Remember, we don't get out much. Thanks for stopping in remember...keep praying..I've been reading on the powerof prayer and I am a firm believer that all the people raying to God for Joey is what has kept my baby alive. If it were not for God and all your prayers my baby would not be here with me. So...thank you for your prayers and please continue them. Pass the word on about the garage sale. We would love to see a great turn out. Linny
Saturday, March 30, 2002 at 08:15 AM (CST)
Hello again everybody. I posted yesterday but felt I had to tell you that the little bumpy thing on Joey's head didn't look like much. Thank God he said that...but...y'know we might still want to get an Xray of it just in case. The life of parents with children with Cancer. Fred, my husband yesterday was laughing at my "Nothing is nothing" statement...but...I know what I meant. You can never leave a leaf unturned. That's what I meant. You do want to remain positive but...vigilant. Anyway, it wasn't Dr. Cheung who saw his bump. It was the new Dr., Dr. Murdock or something like that. But...I still have a little knot in my stomach. Smaller knot after the Dr. saw it. He says to watch it but that it may just be bone structure of his head and like he has less hair, more hair, less hair it may look different. So....we will watch it intently...you know us. For the rest of his life. Otherwise....THANK GOD those antibodies are over for the week!!!!!We don't know what we are going to do next time we come here because the pain meds really didn't work to well. It use to work, now it doesn't. No 2 days are ever the same. He's probably just developed a tolerance to all the drugs he's been using for so long. But, we'll worry about that another day. Today he is well and as I write he is eating a donut. He's eating OK for a 2 year old who has gone through hell. He's mainting his weight...about 24 lbs. He looks a little fuller just because they pump them up with fluids while they get the infusion of the medicines so he's pipiing up a storm. We change like 3 diapers from 8pm to like 10pm. We thought we could go to the park today but it's kind of gloomy like it's going to rain. So...we'll just probably hang around maybe catch a movie with Freddy or something. So..thanks for checking in and thanks for the prayers it's the best thing you can do for Joey and our family!!!!!Love, Linny
Thursday, March 28, 2002 at 11:53 PM (CST)
OK This is my second attempt at writing this post. Yesterday's was lost after I wrote for a looooong time. Today, I don't know. Anyway, here goes. As you may know we are in NY. Joey is OK but has had a terrible week and we still have tommorrow to go. His pain has been horrendous. I don't know if the pain meds he's been getting are just not as good anymore. He may be getting like immune to them or his tolerance is changing but he has just had a terrible week. He's feels pain, the meds don't make him as sleepy so he's crying and angry, another side effect, the entire hour and a half he's getting the medicine. It's been pretty heart wrenching for us. I feel bad for Freddy too because he's been in the room with us seeing all this stuff. He goes, "Mommy is this the part where he gets angry?" It's just been alot to deal with. I know we've been through alot, especially Joey and sometimes it just feels like, ENOUGH ALREADY!!!!! How much longer is this going to go on for? How much pain can one little body take? WHY?!?!?!?!? For God's sake WHY?!?!?!?!?!?
The city is yucky and ugly and gloomy and cold, so that's not helping. We want to go home. CASA CASA. That's what Joey says in the clinic. Like, get me out of here. It's so difficult to know that we have to put him through this stuff. We not only cannot save him from the pain, we have to take him to a place where we allow others to inflict this pain on him in our presence. How can possibly understand that. That's messed up!!!!! Today he wacked me a good one on the cheek. He knows how to fight and defend himself. Watch out!!!! He fights with his brother pretty well. He must think he has to defend himself cuz nobody else will. Poor baby. This life is unimaginable. Unless you live this, you have no clue. It is really undescribable. SIGH!!!! I know though that I can't or shouldn't complain. GOD doesn't like complainers. I think. I think I read that somewhere in the BIBLE. We have to pick up our cross and carry it. Well, we are trying to do that. It really is very difficult. I can't think of too many things that would be worse than your innocent child having a deadly disease and your perfect world turning inside out. I can think of a few, but not many. HUMPH!!!!
I have to believe that there is a better place than this earth and that we will all see it one day and we will learn why some things are the way they are. For right now we just have to get through tommorrow and that's it. Tommorrow is a huge mountain. We will climb it and conquer it and cross it and come out over it again. Once more. That's all we can focus on.
I'm a little worried too because there's been this little thing on the back of his head which is driving me crazy. I told the nurse about it, I told the Dr. about it and today they didn't really look at it. I need the Dr. to look at it or I am going to go crazy touching it, looking at it. Wondering what it is. I know it's nothing but I have to ask. Nothing is nothing either. Did you get that? Nothing is every nothing. Not eating is not nothing. A Mom's instinct is not nothing. AHHHHH dont' pay attention to me. Today I'm just a little wacky. I need this week to end and I want to go home. I want Joey to play in our backyard and sleep in our bed and play with his toys and with his brother and go back to our normal routines.
We gave him a shot of GCSF in the leg. Actually, I held him and Fred gave him the shot because his counts were down to .5 and Dr. Cheung did not want them that low. So...he gave us the shot to give him and today it is at 5.5, that's his ANC (Absolute Neutrophil Counts) the disease fighting cells that need to be strong to fight off diseases. So...that's why these guys are great and nobody else is!!!! They see a tiny problem that might get us in trouble and they jump on it and squish it to death. No more ANC problem.
SIGH!!!Tommorrow is the last clinic day. I hope and pray that it will go better. I'm scared and I don't want to go back but I know I will have to. Tommorrow. Please pray that my baby will not have pain. We hope to be back home Sunday. God Bless You and may you have a wonderful Easter Sunday with your families!!!! That's what counts people. Family and good friends. I'll keep you posted. I'll let you know how tommorrow goes.
By the way,, Joey already saw the Easter Bunny and had an Egg Hunt. Freddy too.
Saturday, March 09, 2002 at 09:49 PM (CST)
Hi friends and family. Just thought I'd write in again and catch you up on what's going on. Joey is doing well. We had a little bit of a scare tonight as we took his temperature and it was getting too close to 100. He had 99.4 at some point tonight and at 100.5 he has to go to the hospital and get his port accessed and blood drawn and the whole thing!!!!! I dread that. I hate for him to get a fever and have to go to the hospital and get pinched and....you know the rest. We hate being in the hospital here in FL. We hate being in the hospital period but most especially here. I was already thinking about calling some airlines. Funny how my life and world revolve around Joey and his health. Nothing else matters at that point. Forget everything, drop eveything and lets go. I was worrying about having to do groceries late today and boy, did that get put back in perspective. Who needs food for tommorrow anyway. We could be in NY tommorrow for all I know. HA!!! Let me knock on wood we don't want to go to NY until we have to which will be on the 24th of March for his next antibody treatment. He's starting to feel a little poopy. I think he's getting a cold or something. Tommorrow I'm taking him for a chest Xray. I don't want to take any chances. He has a little cough and a little runny nose and this little temperature thing is not welcomed. God, I wish things were different. Well, no feeling sorry for ourselves, shake that off!! We have so much to be greatful for. That's what we have to focus on. He's starting to give the BEST kisses.!!! He's such a loving baby. My other one is oving to me, oh and to some girls in school who I won't name. But boy, he has a crush. Every day I have to hear about his girlfriend. Isn't he like 4? Anyway, he drew a picture that he and his girlfriend were going to save me from a shark. HA!!! I'm getting fed to the sharks already. I guess I won't be living with him when I get old. Anyway, Joey is not sleeping too comfotably tonight. I hope this blows over. SIGH!! I hope it's nothing. Yea, like it's ever nothing. I hope it's nothing major I should say. How many days to Sloan? Today is 9th and we leave on the 24th, 2 weeks. SIGH!!!
Along the lines of trusting Sloan and their Drs. We just had a little friend go to Sloan from here. He is not 3 yet and he got treated here in FL, I think at Joe DiMaggio and he finished his 1st year treatment and was going to Sloan for transplant. The parents thought he was clear as they had told him and now, when they get to Sloan to do the tests to prepare for transplant, they find out he is not clear.!!! They are crushed!!! How is that possible? Is it that the hospitals here are just not that qualified to do all the testing correctly? What is it? That is just too scary to think of all the kids that get treatment here in FL. WOW!! Our other little friend who was in transplant, a little girl got out with no problems after just 28days!!!! That's awesome. We were 38 days and with much more than a scratch, but we made it through and that's what counts. May God continue to Bless her and heal her too.!!! It was a beautiful day today that God granted us and Joey got to play outside and we were home together and we thank God for that. We wish we could take Joey to the carnival, but that will also come. We just focus on praying for his healing and for his health to continue so we could be together as a family. Thanks for all your prayers and support.
OH!!! I almost forgot. On March 17th, St. Mark School (Freddy's School) which is on Flamingo a few lights past Pines Blvd. is having a Bake Sale from 9am to 1pm on behalf of Joey. They are also having another Bake Sale, same day, same times at the Publix on Griffin and Dykes I believe. Same times, 9am to 1pm. Please tell others as it will benefit Joey and our family.
In addition....a play at McCarthy High School, the new school next to St. Mark's is going to have a play "Cinderella Wore Combat Boots" and everything they collect will also go to Joey. If you are interested in going the tickets are $5.00 each and they will be sold at the door of the school. The dates are the 14th and 15th of March. That's Thursday the 14th and Friday the 15th at 7:00pm. It is a comedy and age appropriate for all ages so it may be a fun thing to go see with the kids. Please tell others as well and hope to see you there as we will be there as the guests of honor. We are very thankful to eveyone that is trying to help us in so many ways.!!!! If you have any questions about anything call me. 954 442-7805. Thanks for checking in. Keep sending God your prayers for Joey. Thank You!!!Lynette
Sunday, March 03, 2002 at 09:50 AM (CST)
Hi everybody!!!!!
WOW, it's been a looooong time since last I wrote. Over 2 weeks. It has been awesome!!! We are having some very normal days around here. Taking Freddy to school, staying home with Joey, getting him outside to play and get sun. Picking Freddy up, getting McDonald's which Joey loves!!! Being home with my kids!!!!! Daddy working, working, working. Gotta pay those bills.
We are just so very fortunate.
Joey is doing great!!!! He looks great. He feels great. He's having fun, playing with his brother, taking everything from him, fighting, playing, following Freddy around. He's eating OK. He eats some protein, chicken nuggets, french fries and coke. The 3 food groups. He's on oral chemo. Has been since we got back from NY. All the scans were normal, clear, only the urine is still slighly elevated so we won't try to worry about that and take the good days that God is giving us. We are so greatful for his life.
Freddy is in school, having fun again. He had some potty and tummy concerns when we got back from NY but those are settled now and he is enjoying school again. He asks me on Friday when he goes back to school. He recently was able to go to his friends birthday party from school. It was the first time he's been able to do that. We both had fun, of course Joey stays home because he still can't be around people so he doesnt' get anything from them. But don't feel bad for him. At least we are home and he gets to run around and play with all his toys and his brother and he gets to go outside and play. He's not hooked up to a machine in the hospital and we are always thankful to God for that.!!!!
We also had an eventful time preparing for the Fashion Show, anticipating the day to actually come. It was GREAT!!! I cannot say enough about it. The place was beautiful. We had over 200 women and men there. Beautiful caring people that came to support our family. That is such a wonderful feeling!!!! These Moms have been unvelievable all they have done for us!!! The decorations, the fashions by Tommy Bahama, the models...even Freddy's teacher modeled the clothes too, that was soooo sweet. She is also a blessing to us. The centerpieces had real live colorful fish, they had over 70 baskets for the raffle, somebody won a trip to Paradise Island Bahamas, the dessert, and food was great. Everything was Great. The best part was that they also collected alot of money for Joey. We are so very thankful. They worked on this for over 7 months with small children of their own to take care of and it really showed how hard they worked.!!!
We are now just settling in at home, trying to get in a routine and clean up all the mess we brought from NJ and accommodating ourselves better into our house. We are so thankful for all our friends and family who have been our suuport through all of this. We really cherish you and all you do for us. Joey is our angel and God is giving him life. Please continue your prayers as we know that God is listening and we want him to know that others think of him as well and ask God to keep healing him. We still have more treatment ahead but hopefully it will get better and better everyday and every year.
Please contact us through phone or email whenever you want to know about Joey. We like that you care and think of him often.
Lots of love, Linny
Saturday February 16, 2002 2:40 PM CST
Hello everybody. We are so happy to be going home tommorrow!!!! We had to stay the extra day because of the flight. We were finally able to get on with Corporate Angels. They fly corporate planes and if they have extra unused seats they donate them for families like us that have a sick child. We get to fly for free which helps out alot. Especially considering we had to pay extra coming up here because we panicked at the last minute before we were going to fly up. Joey starte dto run a fever, not high but we wanted him in NY and not in Florida. So, we had to pay extra. So.. this kind of offset that. We got the return flight credited for a later date. Thank God for Jet Blue who were very accommodating. Unlike Delta who we flew up with. Their response to our problem was, we can get you there for $1500.00. Oh thanks!!! Thanks for your sensitivity to our situation.
Anyway, as you may well know if you read the prior post, Joey's tests all came back normal. The CT scan, the MIBG scan the bone scan and the bone marrow aspirations. The only thing we are a little bit concerned about is his urine levels are still showing a bit elevated number in one of the numbers. It's called the VMA/HMA urine test and one of the numbers that's suppose to be 26 is 31 for Joey, so slightly elevated. The doctor said that he will just watch it but that he wasn't very concerned because other things than a tumor could make that number show up higher. Sometimes certain things you eat would make it higher. So... I am not going to worry. Everything else looks good and that is what we will focus on.
Aside from that, his treatment went pretty well. He had some pain on like 2 or 3 days mostly. The other days it was controlled better. It's not that he doesn't have pain, it's that with all the pain meds they give him he just gets really cranky and irritated and cries and doesn't act very sane. It's hard to watch but we know he needs to do it to get any residual disease that may be lurking around.
When we get home on Monday he will start the 21 days of oral chemo. It will be his 3rd round. He still has one more to go after that for a total of 4 oral chemo rounds. I am not looking forward to that. His chest Xrays looked good too so. With the Bactrium that he's taking the pneumonia should stay away.
The fashion show on the 23rd of Feb. or this Saturday is coming up. It is to benefit Joey and kids with Neuroblastoma. I am looking forward to that on Saturday. God willing I have plans to be there. I have heard alot of fun things are being prepared and I know that so many MOMs have worked so hard on it to be successful that I am very anxious to see it!!!! Joey is a very lucky boy in many respects, as are we to get help from so many people that know us very little. God Bless them for all their help. It really makes such a difference in our hectic, hurried lives. To know that peoople care to help us. This has been an overwhelming thing to have to go through and it's people like them that support us and try to lessen our load that make it somewhat bearable.
Thank you for checking in on us. We hope to be home Sunday and very happy to be going home. If you are interested in going to the Fashion Show please contact my friend Tere Lopez and she could help you get in touch with the person selling the tickets. Tere's number is 954 443-8589. Hope you can make it. I know it's going to be a great fundraiser for Joey. Thanks, Linny
Monday February 11, 2002 10:53 PM CST
Hello again. GREAT NEWS!!!! ALL of Joey's tests are normal. Clear, no evidence of disease. We don't know about the pipi test but all the major ones are good. That's the CT scan, the bone scan, the MIBG scan and the bone marrow aspirations!!!!! Yahooy. Thank you GOD!!!! We were kind of anxious because some of our little friends have relapsed or have passed away and it's very scary. I can't imagine that. I just have to concentrate on the good that Joey is going through and continue to take it one day at a time. He started the Immunotherapy treatment today. It went OK I guess. He had pain. I kind of had forgotten what it was like. How could I have. I guess I try not to remember. It's a strange thing how our mind works to protect us, I guess. You try to block out those types of things. Joey is more verbal now too so he expresses himself more now and he was saying, "YaYa, Yaya." Which means booboo, it hurts, pain. His little eyes get red and watery and they bulge out like someone is stabbing him in the back. It's like a strong puncturing pain that lasts for a few seconds, but seems longer and then kind of subsides and does it again. Sometimes with several waves of the pain other times just a few and then he kind of just pushes out to keep from feeling it. I guess the best explanation has been that it feels like labor pains, those waves of pain. To think that we have to allow our child to go through that as we stand by and encourage it. It's hard but what is the alternative? Not to give him the treatment and leave it up to chance. It's kind of hard to come to terms with it sometimes but I guess I am happy that Father Murphy put it to me this way,..."God gives you the chance to do your part." "If God wanted to take him, he would." So I guess, for my peace of mind, I need to feel that God has placed us here and led us here to this hospital and these Drs. to do our part to help save Joey. We have to do our part and however difficult that is to see Joey go through this pain, it is to ultimately save his life. God help us, that we may help him survive and that all this pain is not in vain.
Looking back now on Joey's treatment and the very difficult year that we have been through with him, I know that it has been the best thing that we have done. There are so many incidents that I have been able to share with him that we would not have otherwise been able to had we not discovered the cancer in time or given him treatment. Although his last year he pretty much spent it sick and in the hospital we have shared many special, unforgettable moments that I would not trade for anything. All the terrible treatment has been worth it to keep him alive!!!! No regrets. Thank GOD!!!!
Well, hope you celebrate the great news with us and hope to see you at the upcoming Fashion Show Feb 23. Call Margaret if you would like to attend at 954 438-0251.
Thanks for checking in!!!Linny
Sunday February 10, 2002 10:32 PM CST
Hello everybody.
Thought I'd check in today. Joey is doing well thank God. We are in NY at the moment at the Ronald McDonald House where many out of state families stay. It is close to the hospital and very affordable as it is only $20 a night here for families with sick children. We have been here for a week now. We flew up last Friday night. Joey almost had fever and we panicked and jumped on a plane. Kind of funny now because he never really went to the fever mark by the oncologists standards 100.5. That's when we absolutely MUST take him to the hospital because he has that line, the port beneath his skin and they fear a line infection. Joey was around 99.9 when we panicked and decided we wanted to be here in NY just in case he did need to go to the hospital. As you well know if you've been reading our journal, our last visit to the hospital was a nightmare and we are scared to go back. But... as I said, it's kind of funny now because he never really had a fever. We jumped the gun but we are happy to be here. As soon as we set foot in NY we sighed deeply. That's the scary thing about living and returning to Florida. We love our home and our family and just the comforts we have there but knowing that Joey's Drs are here in NY is a BIG concern. As some of you may know we have been contemplating moving to NY permanently because of this dilemma and we tried scouting some areas here but it is just crazy here. We miss our home. The doctors tried to make us feel more comfortable about going home and tried to assure us that they do not foresee anything like the pneumonia ever happening again. That's a little comforting but nonetheless, nobody could actually guarantee that. So....we beleive we are going to go home and try to live a normal life, as much as possible, but just thinking that Joey has to be seen over there and not by these Drs here makes me cringe. Not that the Drs there are not good, believe me we looked into their training before we ever left and they trained at CHOP and St. Judes, two very respected hospitals but, our comfort is with these Drs. and what they have been able to do with Joey with God's help, of course. Anyway, Joey's tests from last week so far have been good. The CT scan, the bone scan and the MIBG scan were all good. They all looked normal, good. Monday, tommorrow we will be getting back the last test, the bone marrow aspirations. I'm a little anxious about that but Fred says that the other tests are major ones and if something were wrong it should indicate in the other tests as well. I feel in my heart that everything will be OK and I pray so hard that tommorrow will be a happy day for us. If everything is clear tommorrow we are suppose to start his Immunotherapy treatment. The little guy can't take a break. He's been off treatment for over 2 months now because of the pneumonia problem. The doctors here don't want to skip a beat. You can't with this disease. He's doing OK. Same kind of worries, he doesn't eat enough, he looks thin, he's got a runny nose and a cough. Other than that he's a normal little kid with a lot of spunk. He pinches his brother when he doesnt' get his way. He argues and tries to make us do what he wants. ALOT!!!!
Freddy is doing well too. Acting up a little, it gets kind of boring around here. We've driven them around town a little to get out of the room. We haven't been able to get dwon anywhere though because Joey can't be around people so he won't get sicker. Imagine that for all you out there. We eat in the car and just drive around with nowhere to get off!!!!!It's as hard as it sounds. They get bored really quick in the car. So next time you are in the car and the kids are acting out, just remember, you will eventually get somewhere and you can take them down. We can't. We turn around and come back to Ronald McDonald House. But,...at least we got out. That's the way I try to look at it.
Yesterday Freddy got to see a magic show downstairs. They try to do things here with the kids. He had fun. He got some balloon swords and hats and got his face painted. He took a picture with Elmo. I thought he'd go, "Yuck" that's for babies." But he didn't he took a nice picture with Elmo. Joey wasn't able to go because, again, he can't be around other kids that might be sick and anyway, he's sick. He has that RSV thing and he can give that to other kids. So Joey stayed with Dad in the room while Mommy went down for the Magic Show and Pizza. This food stuff is going to be the end of me. I must diet. Anyway, SIGH. As you can probably tell, I'm a little anxious about tommorrow as we have not done this since October. I am not looking forward to this tommorrow. He gets all swollen and cranky but I know it's necessary and we have to feel fortunate that it may be helping him.
We are very sad that a little girl, beautiful little girl has passed away, over the holidays since we were last here. She was a little older than Joey, I think 3 or 4. She had completed her treatment in Missouri and had come in October to start Immunotherapy. When we last saw her and her Mommy they had just found out that she relapsed. We knew she was going to start with new treatment and then just lately we found out that she passed away over the holidays because of some complication she had. That is just too scary to think about and too sad. She was a beautiful little girl, now she's a beautiful little angel. We wish peace for her family. Her Mommy has another little boy and they just found out they are pregnant. I hope that will help them with the pain of Hannah.
We also just found out, a few days ago that one of Joey's little friends who was right alongside of Joey in treatment has relapsed. The parents are crushed. He is their only child. They are from Wisconsin and now must see what they need to do from here. It's just devastating to know that there is no guarantee. After all the pain and suffering these tiny babies go through, there is no guarantee that they will survive. It really is too much but I guess....It helps me to think of Christopher Reeves in moments like these and how is life fair for him? Who are we to complain? We must keep on with the struggle and pray and hope and pray some more. Faith......there is a God and He has a plan. One much bigger and greater than we can understand. That is my hope and my strength. There is a much better place than this and we will all see it one day, God willing. Some will see it sooner than others. They may be considered the lucky ones. OK. That sounds depressing. I must sleep and rest. Tommorrow will be a good day, God willing!!! Please pray for Joey and for all the little children that suffer in this world. Thanks.
Wednesday February 6, 2002 10:42 PM CST
Hi friends,
Just a quick hello to let you know how we are doing. We are in Ny with Joey. We left rather abruptly on Friday night because we feared that Joey was coming down with a fever and were hysterical about him having to go to the hospital down there again. We had such a terrible experience there last time, as you know with the pneumonia that we did not want to take him there again!! So, rather than leaving on Sat. at 11am as we had scheduled we left Friday night before his fever got out of control. Thankfully though he has not had a fever anyway but we are happy that we came nonetheless for peace of mind. Since then we have only had a chest Xray which looks normal. That's good. We did a bone scan and bone marrow aspirates today as well as the pipi collection, finally. We also found out today that he has RSV, which is a very bad virus, so they gave him a 3 hour medicine infusion today to help him with that. The doctors don't seem very concernd so we won't be either. When they worry, we worry. When they don't worry we TRY not to worry. We are doing all we can. Dr. Cheung, his oncologist told us today that he felt that we should not move to NY. He felt that Joey has been through the worst and that he does not anticipate for him to have another bad episode like he just went through. He said that the worst that could've happened was what he just went through and with the preventative Bactrim he should be OK. He also said that he was not sure that Joey was going to make it out of the PCP Pneumonia because of all the complications. He said that he didn't think he was going to get out of the hospital. The other Dr. said the same thing. That was very scary coming from them. I knew he was bad but they really put it in perspective coming from them and from all the things they see. Dr. Cheung said that the few pneumomediasstinums that he's seen don't make it out of the hospital. Thank God Joey is here. THANK GOD!!!!
So...we have more testing tommorrow. Another scan MIBG scan and then we are going to wait for the results on Friday. If everything is clear and good as we expect it to be then Joey is scheduled to start Immunotherapy on Monday to Friday of next week. I knew these guys would not want to skip a beat. We are happy that he's going to start but also wish it was all over. We thank God though that he is doing well overall.
We had some bad news concerning a little friend of Joey's who passed away on Christmas eve, only 3 years old from Neuroblastoma. Also, another little friend of Joey's is relapsing after only a few months out of Stem cell trasplant. Please say an extra prayer for them as we wish no children should have to go through this! Please pray especially hard that all of Joey's tests come back clear. I hate to wait for these results!!!
Freddy is doing fine here with us and having a good time playing and getting away with getting more toys.
Thanks again for checking in and caring for our little Joey!!! God Bless, Linny
Thursday January 31, 2002 7:18 AM CST
Hi everybody. I haven't updated in a while. Joey is doing great! We have been home now for about 3 weeks with no chemo, no anything. It feels great! The only thing he has to take is the antibiotic Bactrim to prevent getting the Pneumonia again. He has to take that for 6 months. Oh and we started giving him something called Pericatin which is suppose to increase his appetite. We are giving it to him and he's eating just a tiny bit better. Nothing dramatic. But, we are getting ready to take him to NY on Saturday, God willing. We are getting anxious that he doesn't have anything as far as treatment going on. It's not comforting to know that the Cancer might be lurking and we are not giving him anything. So...we are anxious for him to get back on track. It's almost like a double edged sword. You don't want him to get anything because he starts to look and act normal but at the same time, it's scary not to be giving him anyhting. So hopefully Saturday we will be bound for NY and they will start the testing Tues., Wednesday and Thursday. All the usual 3 month scans to make sure everything is clear. We are confident that God will help him and make everything clear!!!Keep those prayers coming!!!!!
Unfortunately, Freddy,his brother is now sick with a cold and on antibiotics. I swear, when it's not one thing it's another. He has a terrible cold and we are giving everything to try to get rid of it by Saturday. We absolutley want to get on that plane on Saturday.
Other than that I have been busy at work trying to get Joey's newsletter out. It has some pictures of the kids and many of Joey. It updates you on his treatment and talks about the fundraisers we have had this year. It also talks about the upcoming Fashion Show/Auction. It's scheduled for the 23rd of February at the Signature Grand in Davie. If you would like to attend, the person to contact is Margaret at 954 438-0251.
Well, thanks again for checking in on us. Joey is a strong, handsome little boy and we are greatful for all your faith and prayers!!! Linny
Thursday, January 10, 2002 at 10:40 PM (CST)
Hi everybody!!! Joey is doing great. He is starting to eat a little tiny bit more and he seems to be walking better and is acting like a normal little boy at home. It's AWESOME to see him have a normal day! We are back to the clinic tommorrow for blood counts but everything should be OK. Just a little check up makd sure things are going OK. We were contacted yesterday from NY Dr.s and they want us up there first week of February for complete testing. It's his 3 month check up tests which include bone marrow scans, aspirations, CT scan and MIBG scan as well as the pipi collection he has to redo. His levels in the pipi were a little bit high last time. I am confident that GOD will make everything come out looking great! We have had a great couple of days at home. Freddy is back to school. He LOVES it. I tried to keep him home one day because he had an allergic reaction to a peanut butter cookie and he would not hear of it. He wanted to go to school. So... I sent him. Who's the boss around here anyway? He also just started Tball this year. This year his team is called the Philly's. He changed teams so he could be with his Primitos. That's cousin's for you non spanish speaking friends. Johnny and Kevin are also 4 and 5 years old like him so he had a great time for the first day.
Back to Joey. I couldn't be happier to see him so well. Well, I could ask for some hair but that will come in due time. He's cute anyway. The next fundraiser is also under way. So... here goes. Hope you can make it. It would be a great help to us if you could go and invite others as well. It seems like it's going to be pretty exciting with the trip they are going to raffle to the Bahamas. I'd go. Well, I am going but I'd go even if it wasn't for us. Here's the info. Pass it on to as many people as you can and like.
MOMS Club of SW Pembroke Pine
Presents
TROPICAL PARADISE
Fashion Show, Luncheon and Auction
Benefits Families Fighting Neuroblastoma
Fashions by Tommy Bahama
SATURDAY February 23, 2002
11:00am to 3:00pm
Signature Grand - 6900 State Road, Davie
Seating is limited. Check in by name only. Make checks payable to MOMS Club of SWPP
For reservations please contact Margaret at (954) 438-0251
$30 per person
You can win a trip to Atlantis, Paradise Island Bahamas.
So.... hope to see you there. I think it's going to be fun and it will really help us out alot. I know many of you ask us how you can help and we just never know what to say or how to ask. Well, this is one way you'd be helping us and mainly Joey and helping to find a cure for Neuroblastoma. Thanks. You can also contact me if you want to let me know you are going. Linny (954) 442-7805.
Saturday, January 05, 2002 at 03:31 PM (CST)
Happy New Year!!!!!
We are so very happy to finally have our Joey back home!!! We were released from the hospital on Wednesday and have been home all these wonderful days. Joey got home and wandered over to the Christmas tree and started pulling wrapping paper off the presents. Thank God they were all his. Freddy was very good about not opening Joey's presents. He helped his little brother finishing opening them when he couldn't pull the paper of anymore by himself. They hugged each other and kissed each other for a long time when we walked through the door. It was the cutest thing!! They can't live together and they can't live apart!!! So we just took pictures and enjoyed them opening their presents all over again. What happiness it brings us to be able to see and experience that. We felt like we won the lotto as we drove him home from the hospital!!!! This pneumonia was really a close call and too close for comfort. We really could've lost him. Thank God that He is watching over Joey and has a greater purpose for his life. I just know that this Christmas although we were not together and we celebrated it kind of strangely has been the best yet. It is well over 10 days from Chritmas and we are still in the Christmas mode. It is GREAT to be home with our children seeing them running around each other and making dinosaur noises.
Now we need to concentrate on getting Joey to eat more and better food. That is the battle of the century. Not only is he a toddler and doesn't want to eat anything weird or new, he likes saying NO and lets not forget he had a year of chemo that have ruined his taste buds. So... to put it mildly he's very difficult to feed. He still eats grilled cheese mostly and water, some cookies, some french fries, might have a chicken nugget, rice cakes....that's basically it. We are considering different things at this point. He may need to get a peg put in his stomach if he doesn't start eating better on his own.
Right now we don't know when we'll be going to NY, we haven't been able to talk with the Drs. in NY so it might be mid month and we'll be going for his 3 month testing first. Depending on how that turns out then they'll determine what his next treatment will be as far as when he'll start back on the Immunotherapy and oral chemo and all that. Right now he has to take Bactrum for the pneumonia he had for about 6 months. That's to prevent it from coming back.
Well, happy New Year and the best of everything for your families. Thanks for checking up on us and keep praying for Joey. Thanks
Tuesday, January 01, 2002 at 04:54 PM (CST)
Happy NEW YEAR!!!!
And it is that for us!!! Thank God today they removed Joey's chest tube. He is finally breathing well on his own and he is not accummulating any more air in his chest. They were able to see that today after having taken him off the suction all day yesterday and through the night. His lungs were OK. He still has the NG tube in his nose which is what he gets fed with. He's basically getting about 900 calories through there a day and anything else he manages to get in his mouth. We did spend New Years in the hospital Joey and Mommy at the hospital and Daddy with Freddy at home. It was too reminiscent of last year but the important thing is that he is better today than he was a day ago and much better than he was a year ago. We now have to concentrate on getting him to eat and get strong to get him to NY for his 3 month scans, the bone marrows, the CT and the MIBG scans all to make sure that the monster is dead and not coming back!! That's what we parents call the Neurobalstoma, a monster that wants to take our baby. But with GOD's help that won't happen and we pray very hard and very often that He allows us to keep our baby! God Bless you all and your families and may God grant you much Health and peace in the New Year! Thanks for checking in and please remeber Joey in your prayers he really wants to live. Linny
Friday, December 28, 2001 at 07:04 PM (CST)
Hello Dear friends,
Joey is doing much better today. He has been taken off the breathing tube. He is not as swollen anymore and looks like my adorable baby boy once more. He didn't get the chest tube pulled out today though as we thought he would because he still has some air leakage from his right lung into his dhest cavity. It was compressing the lung a little today so they had to keep it in and attach him to the suction to suction the air out os as not to harm his lungs or any other major organs like the heart. Fortunately the lung baounce back after they put the suction on again. That's a good thing. Now it's just a matter of waiting til the lung heals and I declare in GOD's name that that lung will heal.!!!They are going to wait until Monday to try again and take him off the suction to see if the lung heals. Let's all pray for that please. I've read that the more specific the prayer the better. I imagine so. I've been praying very specifically for the sealing of the air leak in Joey's lungs so that they may heal and get him home!!!! I want so much for him to be home. Christmas came and went and he never saw the Christmas tree up or the lights in the neighborhood. It's little things like that that seem so unfair that he can't experience like a normal kid. I know that there'll be next year but poor baby. He's been in the hospital now for 2 weeks going on 3. He hasn't een able to walk around for all that time because he's attached to so many things. I hope we'll be able to get him around soon. I think he still feels pain in his chest or lungs or something because he dosn't seem to want to walk. Anyway, we have to be thankful that he is much better today than 2 weeks ago and for that we are thankful. We are thankful that he canlaugh with his brother and hear his little laugh!!!I hope that God will grant us many year of hearing his laughter. Keep praying please as his battle continues and thank you for caring.
Wednesday, December 26, 2001 at 10:42 PM (CST)
Our dear friends,
First of all Merry Christmas. We did have a Merry Christmas because our Joey is doing better today than he was doing a few days ago. It has been a stressful 2 weeks and we are thankful that he is on his way to recovery. Today he was less puffier, they took his tube of oxygen from his nose. he no longer needs it. Tommorrow they may take off the chest tube. He is being weened off the medications and he is doing much better all praise and thanks to GOD!!!! Once again our Father has gotten our little Joey out of the dumps. How fortunate we are!!! We are still in the hospital at Joe DiMaggio in the ICU. We spent Christmas there but God has a plan that we do not know!! Fred and I took turns with Freddy on Christmas day and Freddy went to see Joey for a little while in the hospital. How fortunate you are to have your family at home on such a wonderful day!!! I hope that you realize that. Thank you for all your calls and support and for always thinking about us and letting us know you care. We don't expect for you to always come see us or call everyday but it does break up the monotony of our day and lets us know that people are thinking about us and praying for Joey which at times like these are the most comforting things we can ask for!!! Hopefully we will be home soon as a family and continue to cherish the times we can spend together.!!!
Wednesday, December 26, 2001 at 10:42 PM (CST)
Our dear friends,
First of all Merry Christmas. We did have a Merry Christmas because our Joey is doing better today than he was doing a few days ago. It has been a stressful 2 weeks and we are thankful that he is on his way to recovery. Today he was less puffier, they took his tube of oxygen from his nose. he no longer needs it. Tommorrow they may take off the chest tube. He is being weened off the medications and he is doing much better all praise and thanks to GOD!!!! Once again our Father has gotten our little Joey out of the dumps. How fortunate we are!!! We are still in the hospital at Joe DiMaggio in the ICU. We spent Christmas there but God has a plan that we do not know!! Fred and I took turns with Freddy on Christmas day and Freddy went to see Joey for a little while in the hospital. How fortunate you are to have your family at home on such a wonderful day!!! I hope that you realize that. Thank you for all your calls and support and for always thinking about us and letting us know you care. We don't expect for you to always come see us or call everyday but it does break up the monotony of our day and lets us know that people are thinking about us and praying for Joey which at times like these are the most comforting things we can ask for!!! Hopefully we will be home soon as a family and continue to cherish the times we can spend together.!!!
Friday, December 21, 2001 at 10:39 PM (CST)
Dear friends,
It's been a week since my last journal entry and I don't know how I am up right now writing this entry but I know many of you are concerned about Joey and I thought I should update you on his progress. He's still in the ICE at Joe DiMaggio. Unfortunately. He's had other complications, other than the bad Pneumonia called PCP. That in and of itself could have been deadly to him. Thank God it has not been. We don't think the pneumonia is getting worse. We think it's kind of stable right now. It's supposedly a long healing process for his lungs. What we are battling mostly right now is this numo mediastinum in his chest. That's air trapped in his chest. Tommorrow will be 2 weeks that Joey's been in the hospital. My poor baby doesn't get a break!!!!!He has this air trapped in his chest and as the days went by his cheeks started to get puffy and his neck and his chest and his back. The gravity is making the air go up and he has air trapped everywhere. He's very uncomfortable. Apparently his lungs were bad from the pneumonia and they must of popped or leaked or something and all this air is escaping. They can't really pinpoint where it's doming from. They really can't do anything about it. The air is suppose to reabsorb and take care of itself but it hasn't done that yet and he's just getting puffier and more uncomfortable. Yesterday after the morning Xray which they are doing every morning, they saw that one of his lungs was getting pushed in by the pressure of the trapped air and his heart was also shifting away from it's original position so the Dr.'s in the ICU did an emergency procedure where they sedated him and placed a tube in his side around his lung to let some of the pressure out. The lungs went back into place and we were happy about that but apparently there are more pockets of air that did not get out. His neck and face are very puffy from all the trapped air that's raising up. I hate to see my baby so uncomfortable. He is also getting fed from a tube in his nose. He also has a tube in his nose for air because from the pneumonia and the air leak his lungs weren't bringing in enough air on their own so they have to be giving him air 24 hours a day. It's very fustrating to just have to wait it out. There's really not much they can do they say. We have to wait till the lung starts to heal itself and then hopefully the puffiness will start to reabsorb but in the meantime we are very impatient to see him comfortable. That's all we ask that he's comfortable. That poor child has been through too much!!!! Please pray for our Joey that his lungs heal that the air goes away and that his little body recupperates quickly. Thanks for caring. Lynette
Saturday, December 15, 2001 at 02:03 PM (CST)
Well, I can't believe I'm on the computer writing about this but in a way I think it helps me get it out. Joey is in the hospital in ICU with Pneumonia. The bad kind I wrote about last time. The PCP one. It's the one we didn't want him to have because it's the worst one and it's hard to fight and it's aggressive and our little baby has it. He really looks down. I hate to see him like that, he hardly wants to move or play or eat or anything. he's just there on top of us. He requires the blow by tube for oxygen the entire 24 hour period, even through the night. It's been dificult but I know it's harder for him than it is for me. It just seems that he's struggling to breathe. His oxygen level is low at about 84 or 88 if we don't put the oxygen thing in his face.We can't use the mask or the thing in his nose because he'll pull it off. Anyway, I just got home. It's about 2:30pm Fred and I take turns at the hospital around the clock. I stay the night and he comes in the morning so I can go home, pick up Freddy from school, have lunch, take a shower, and head back to the hospital all over again. We've been soing that since Saturday. So, I hope you are not complaining about all the shopping and running around you have to do. I wish I were so lucky. I hope and pray that Joey will be fine by Christmas. I just want him home and running around with his brother. Sometimes I think this is too much to handle but we have to do it for Joey and Freddy!!!!There's no other way and I know nobody could do it better. So, we continue. I hope God gives him a break soon and gets him out of the hospital soon. They have to place and NG tube now down his nose because he's too weak and doesn't really want to eat too much. He doesn't eat too much to begin with so imagine with the way he feels. I just wish so much we were still at Sloan. The doctors here didn't start the antibiotic quickly like Dr. Cheung suggested and he was right, they weren't. They told us that they were almost 90 percent sure it wasn't the bad Pneumonia, well, they were wrong and Joey could have been getting the antibiotic since Saturday instead of Tuesday. It's very fustrating!! My baby is suffering. again. How much is a little child suppose to suffer? Life is really not fair. God has to get him through this!!! God please, get him through this!!!! Please pray for our Joey!!! Linny
Tuesday, December 11, 2001 at 10:44 AM (CST)
Hello again. This time not such good news. We are back in the hospital in FL. Joey was home Thursday, and then Friday night he started getting warm. Saturday we had to get admitted again and this time the chest xrays were not clear. He has pneumonia! Although we were in the hospital and they had done 2 chest xrays before, they had said that he was clear. Anyway, we are in the hospital and they are giving him antibiotics around the clock. We still want them to give him an antibiotic that the Dr. from Sloan told us he should be on and they haven't started him on it yet. It's kind of fustrating having to wait to get the 2 doctors to communicate. Something gets lost in the communication line. So, today, they did a bronchioscopy (I'm not sure that's the right spelling) but essentially they were going to sedated him and put some saline in his lungs then suck it back out to culture it and see what type of pneumonia it is. Apparently there's a bad kind called PCP and we are hoping it's not that one. I know I attach a bad connotation to pneumonia, everybody I ever hear that has that is like a bad thing. I'm hoping that the medicines are advanced enough that it's treatable. It's just that with his low immunity it must be harder for him. Poor baby. He can't get a break! God is still with him and helping along the way. These curve balls that come from nowhere are hard to swallow though. It starts to feel like things are going to get better and more normal and then we are back in the hsopital. But, when I start to feel down I think that I am no one to complain. There are those that have it worse than I or Joey. It seems kind of hard to believe but it is true and we have to pull our strength from them. I think about Christopher Reeves alot and what his life was and is and that he wants to live and go on and I imagine his days are much, much harder than ours. But of course, we are human and we wish that our world were perfect and that we could be enjoying both our children at home and preparing for the holidays rather that having to be worried hurting Joey in the hospital. But, I know that God will get him through this and we will be together home soon to enjoy each other. Please look at your life and everything good you have in it. Thank God for all those little things we tend to forget. God Bless you and please keep our little baby in your prayers. Thanks. Linny
Thursday, December 06, 2001 at 09:33 PM (CST)
Hello everybody. We are home in Pembroke Pines. We are out of the hospital thank GOD! We were there from Saturday to Wednesday riding out the fever. They never really found out why he had fever but they speculate is was a virus. The reason for that was that he had high temperatures up to 104 and he went up and down like a yoyo. His hair fell out again. This time the oral chemo must of been stronger for him or something. I mean, it's the same dosage and same amount of days but for some reason his hair fell out this time. It looked really bad. He had like little clumps so we decided to kind of shave it off a little close to his head so it wouldn't look so patchy. I had wanted to do some nice Christmas pictures but I can't get myself around to taking them anywhere. I have to coordinate clothes then there's the problem of where do I take him? Is it safe to take him to get a picture? I don't want him to get sick again. I want to make it to NY so we can be back in time for Santa. I want to be home so badly with our family in our home and everybody well. Well, he's doing OK otherwise, he's eating a little less than before but he's eating and he's clingy alot, I wonder sometimes if something is bothering him or he's in pain somewhere, like his bones or something and he doesn't really know how to tell me. He says YAYA sometimes which is another name for BOOBOO. I feel sometimes like life is normal and then I see him without hair and I have to give him medication and I can't really take him places and it hits me that normal is no longer the same thing for us. Normal now is being home, no fevers hopefully, no problems. A day at a time. That's all GOD grants us and wants us to appreciate!!! Hopefully if things stay on schedule we are going to NY Sunday through Saturday. Keep Joey in your prayers and don't forget our friends twin babies too,Kayly and Kaitlin. They are still at Miami Children's with RSV. Thanks, sign in the guestbook please.
Wednesday, December 05, 2001 at 10:14 AM (CST)
Well everybody, we are not in NY. We are home in Pembroke Pines. Joey had to be admitted to the hospital, Joe DiMaggio because after we took him to clinic on Friday and his counts were 8.2, up from 7.9 Tuesday we were happy. Although, as we left the clinic we noticed he felt a little warmer than he usually is. When we got home and took his temperature it was 101. If he's higher than 100.5 we are suppose to take him in to check his line to make sure he doesn't have a line infection (from his port). That's like a major thing. So,...we drove back to the hospital, they accessed him, pinched him on his chest, on his port, drew blood, gave him an antibiotic, some Tylenol and his fever started to drop. We were able to leave the hospital because he was on the floor walking and eating and the ER doctor thought it was OK, they had given him an antibiotic so he felt we could go and we wanted to go, believe me. You start to hate being at the hospital,,, but our insticts told us different, we probably should have stayed because through the night we had to be giving him Tylenol and Motrin to keep the fever down. He got up to 104. That was scary. Considering that in NY if you are 100.5 you are in the HOSPITAL no questions asked and on to antibiotics round the clock. We called Dr. Hanif, his oncologist here and we spoke to him all through the night. We went' back to the hospital Saturday and were admitted. Dr. Cheung from NY wanted us observed in the hospital with antibiotics round the clock. So...we've been there ever since Saturday. He was up and down with the fever like a yoyo until yesterday his fever has stayed down and no tylenol. So I think we'll be coming home today hopefully. OH our home...the things we take for granted. How many families spend days after days in the hospital. Thankfully I think we'll be able to come home tonight. Joey still has a cough but his lungs they say are clear, they think he probably caught a virus. They say it's typical of a virus to go hight and do the yoyo thing for days. So....I just can never remember him having a fever for so many days in NY. Selective memory perhaps. They just bombard him over there, they pull out the big guns right away, here it seems they are more cautious and slower. Defintely slower I have to say. Joey needed blood too about a day ago, so maybe that helped him kick this thing. So.. we are looking at going to NY for Immunotherapy on Sunday returning Saturday. Hope we can keep that date. I want to be home for Christmas. We haven't been able to get out lights or our Christmans tree up. Anyway, thanks for checking in on us. Keep Joey in your prayers please and our little friends Kayla and Kaitlyn, Hector and Monica's little twins born in October, they are in the hospital with both of them they have colds or something and we are worried about them and the parents too. It's terrible to have your babies in the hosptal. Big brother Christian too, he must be missing them. Freddy is doing well too thanks! Lots of love, Linny
Thursday, November 29, 2001 at 09:55 AM (CST)
Well friends,
Since last I wrote we have been back to the clinic. Very strangely Joey's blood counts were down again after having been transfused the Wednesday before Thanksgiving. I have no idea what that is about, I guess I'm a little worried and trying not to worry without reason, I know that Joey is in God's hands and it is what it is. It may be the oral chemo he took for 21 days and stopped on Monday. Hopefully that's all. I couldn't imagine why else. Anyway, the Dr., Dr. Hanif the oncologist wanted to see us tommorrow Friday to make sure that his counts were going up. If he's under 8, his hemoglobin, he needs to be transfused. He was 7.6 the Wednesday before Thanksgiving shich is why they gave him blood and then on Tuesday it was down again to 7.9. I guess they didn't give him blood again to see what he does on his won until Friday. But if he's down again tommorrow we'll be at the hospital, hopefully not as long as we were the first time. He needs to be good to go, Sunday to NY for Immunotherapy. Also, I'm embarrassed to say that we still have not done the Urine collection. We are trying to forget about it I guess. It's a whole sticky pipi, attached to him thing for 24 hours but I know we have to do it and we have to do it before we go back. So, I'll let you know tommorrow what's going on. Thanks for checking in and please keep Joey in your prayers. Linny
Monday, November 26, 2001 at 07:49 PM (CST)
Well everybody, I spoke too soon last time. Last I wrote was Tuesday and everything was fine. Well, everything is fine, don't get me wrong but when we went to clinic on Wednesday, the day before Thanksgiving, to get a finger stick and see how his blood counts were, I thought, in and out. Well..... we got to the clinic at 9am and got home at 9pm. How's that? It turned out that he needed a blood transfusion, he had 7.6 and they transfuse when he's under 8. We also decided to get a chest Xray because he has a bad cough, he's had a runny nose forever. Thankfully the Xray was clear, they said that soemthing is brewing but no pneumonia or anything. Brewing? What is that? Anyway, it took forever to get his blood and give it to him. We are so use to getting stuff at Sloan, I guess now I need to say pretty quickly because these people were on sloooow motion. It took all day to give him blood. Fred was working and I was with both kids. Thank God Freddy didn't have school and he was with me otherwise I don't know how I would've scrambled. Although, it was a little trying tohave them both by myself in the hospital. I had to feed them and couldn't leave and Fred couldn't come. We managed Thank God. Thank God Mommy always has snacks for many days. That's why our backpack is so heavy. I knew one day it would come in handy. Anyway, they let us leave that night and Fred picked up our Turkey stuff. We had a great Thanksgiving at Home. We Thanked God for Joey being healed and able to be with us and for all the blessings He has allowed us including all our friends and family that have been so helpful to us. We are due back in clinic tommorrow and I need to talk to them about his cough. It needs to get something. Antibiotics or something. I called Sloan today to make sure that I was doing everything I was suppose to be doing and the nurse said that maybe they should give him an antibiotic even though he doesn't have a fever if it's not getting better. We are due to go back to NY on Sunday. Not looking forward to flying but we are in God's hands and we have to trust that we are under His care and His will will be done no matter what we want or think. So....we have to go for Joey's sake and keep on with his treatment that will hopefully keep him alive.!!!!! Thanks for checking in on us and con't forget to wirte in the journal, that way I know you came around. Thanks!!!!
Tuesday, November 20, 2001 at 08:25 PM (CST)
Well everybody.....I know I haven't written lately. I am getting very used to not having to report anything. It is really nice to just be the same and nothing is really going on. Joey is doing great! He is going to his weekly visits for blood counts and so far everything has been fine. He had his IV Pentamidine last week, that's a little bit of an ordeal but NOTHING compared to what we've been through. He did get he line accessed to draw blood to see if he gets that HAMA I've talked about, you know the thing that if his body starts producing he doesn't have to go to NY to get the Immunotherapy treatment. Then, the following day, like his port was already accessed we left the needle thing in for one more day to give him the Pentamidine, the antibiotic. Today, the doctors called, (scared us at first) but it was good news. Joey doesn't have to take an oral medicine that we've been having to give him since June, since the transplant. We use to give it to him Twice a day, now no more!!!! We are having a not taking the medicine party, well, not really but I want to have one. He really deserves it. He also doesn't have to get the Pentamidine through his IV line either!!!! YAHOOOO. No more Joe DiMaggio to get pinched in the chest!!!! Believe me, it's a big deal to him. That needle looks like a fish hook. We gave him a topical anesthetic prior to getting pinched there, but he still has to see the nurse clean the area, with gloves and put the needle in. He shakes, his little hands shake as they are going to do it. It breaks my heart but my heart can take alot as I've been able to witness. That's GOD holding my heart in his hands because no sane mother can see their baby being hurt and crying and not have their heart breaking. Anyway, back to the good News. It is GOOD NEWS!!!!!We are still having to do that pipi collection. We have to do it but have been procrastinating. We just hate to stick that thing on his pipi and they want 24 hour collection. We are going to check see if we can do 12 hours instead so at least it'll only be when he's sleeping. Him walking around with that long tube coming out of his diaper and that bag, it's a pain. Listen to me complaining. What am I complaining about.??? We are HOME and healthy and all is Great!!! Joey is eating, whatever he wants...lately it's pancakes for breakfast and lunch and dinner. Grilled cheese sometimes, corn pops. He even has had some chicken nuggets from McDonalds, Sprite, yahooey. We are eating rice, and some soup noodles, Funions, raisins....bagels with butter. We can't complain. We hope and pray to GOD that he remains well and continues to heal Joey. I forget for short spans of time that today is all we really have and when you realize that you see things differently. It's hard, even for me to not get caught up in things I want to do or convince myself I have to do....But really what do you really have to do? If we were to die right now? In an hour what would we have to do? That answer is what it's really about and life blurrs that up for us in so many ways, sadly. Even for us with this life threatening problem. You almost blurr life with menial things to take up space, time but that's all it is...filling up time. Today as I fed my Freddy, I was trying to rush to get on the computer to check out some comforters to put on their beds. What was that about? I wasn't savoring the moment, feeding my Freddy. What a privilege. My healthy, loving boy wanted me to feed him and thank God I realized that that's what it's about. That's why I wanted God to give him to me. As I lay Joey down on the bed for a nap, I was trying to put him down to go do other stuff and as I lay him down and his cheek was touching mine I thought...I want to stay like this forever. Thank GOD for my babies and my family!!!! Hope you all have a great thanksgiving and enjoy each other!!!! Thanks for checking in on us and please keep Joey and our family in your prayers!!!!
Sunday, November 11, 2001 at 07:33 PM (CST)
Well friends and family, I am very happy to report that there is nothing spectacular to report!!! It almost seems strange that we are somewhat normal around here. We are doing very normal things. Freddy is going to school, Joey is staying home with Mommy, missing his brother (Sheddy) as he calls him until we pick him up again. Can't live with him and can't live without him. Mommy is trying to organize the boxes from NJ. No little feat since we have toys for 2 houses. Joey has been to his doctors, the oncologist and his new pediatrician and everything seems fine. His counts are fine, he's eating and playing. He still has a little cough but his lungs are clear, both doctors tell us. Freddy has allergies flared up, Florida is big on allergies with all the grass and trees and humidity. We are trying to redecorate the kids rooms, since Joey will now need his own bedroom. Big brother is getting kind of mad that little brother wants everything he has....So we are making what used to be the playroom Joey's room. He doesn't know that but it makes us happy to know he'll have his own room with his own stuff. Poor Freddy he's having a hard time having to share everything with Joey. It's tough to be fair whien one is smaller and the other bigger, one is sick and the other isn't, (thank God) but it's hard I guess even when one isn't sick and when the little one is, it must be hard on Freddy too...but I can tell you it's been a lot harder on Joey. At least we are concsious about it and try to be as equal as possible. Freddy is having fun though, He's in school and playing T-ball. Joey seems like he's going to love sports. maybe even more than Freddy. Freddy is daydreaming about being a Palentologist as he's on the field, playing with the orange dirt. That's what he told his dad when his Dad asked him what he was daydreaming about. HAHA.!! Anyway, Joey is taking his oral chemo and other than that he seems to be a regular toddler. Getting into everything and saying NO,wanting his way. thank God for all that!!!We don't have to be back until December 3 thru 7th to NY. Hopefully everything will continue to go well as it is with God's help. Thank you for dropping in to see how Joey is doing. Thank you all for your calls, your concern, your prayers, your friendships. Tuesday is blood counts again and hopefully that's it until the following Tuesday. Kind of normal.....don't you think? Believe me, it's a blessing for us! Thank you God for your grace!
Friday, November 02, 2001 at 10:35 AM (CST)
Hi friends and family. We are presently in the clinic receiving Immunotherapy. Fred is with Joey while I am with Freddy in the playroom, today they are playing SHREK. Freddy has a good time here. He gets to play with other kids and do stuff. Joey on the other hand plays a little too sometimes, usually attached to his IV pole while we wait til they make up his medications. Once they start them though we have to go into the room, he gets pain meds every couple of minutes and he gets very drowsy and irritable. He doesn't know what to do with himself and we try to accommodate him and give him what he wants but we don't always know what he wants or misunderstand him and he gets very upset, tries to get on the floor but he has too many things attached and he gets all tangleg up. We are so happy when it's over for the day!!!! It's been going OK. Some days have been better than others. He was pretty OK yesterday. If he doesn't feel pain and is not so irritable, that's what we call a good day. It's still horrendous to anybody else that might see it, we are just use to it already. But...it's what helps him and that's the way we have to see it. Hopefully if everything goes well we will be on our way home tommorrow and this time for 5 weeks hopefully. We can't wait. We are all Halloweened out. There were Halloween functions everyday and sometimes twice both in the clinic and then at the Ronald McDonald House. They had a blast, thank God. I was remembering how last year Freddy was supposed to be Batman and Joey Robin but Joey never got to dress up, we were already in the hospital. We are so greatful that God let him have fun this year with his brother. They were Batman, this year Joey was Batman and Freddy was Bat Ninja. They danced at the Halloween party. It was very cute and I have alot of pictures. How fortunate I feel to be able to have seen that!!!!Big grin on my face. Anyway, his lungs sounded a little gurggely, it's probably from the medications they give him that do that, sounds like he's under the water when he breathes but as the day goes on it clears up and he still has a very junky cough from the cold we all had. So...they think it's OK they are just going to give him more meds to clear the fluid and that should be it. I hvae to go in a few minutes, Fred is taking the first part when he's a little more docile and then I take over when he gets a little wackier. Mommies....what can I say? We understand them. Freddy wants some ice to eat, so gotta go. Talk soon,hopefully from HOME HOME. Love you all for praying and checking in on us. Linny
Friday, November 02, 2001 at 10:35 AM (CST)
Hi friends and family. We are presently in the clinic receiving Immunotherapy. Fred is with Joey while I am with Freddy in the playroom, today they are playing SHREK. Freddy has a good time here. He gets to play with other kids and do stuff. Joey on the other hand plays a little too sometimes, usually attached to his IV pole while we wait til they make up his medications. Once they start them though we have to go into the room, he gets pain meds every couple of minutes and he gets very drowsy and irritable. He doesn't know what to do with himself and we try to accommodate him and give him what he wants but we don't always know what he wants or misunderstand him and he gets very upset, tries to get on the floor but he has too many things attached and he gets all tangleg up. We are so happy when it's over for the day!!!! It's been going OK. Some days have been better than others. He was pretty OK yesterday. If he doesn't feel pain and is not so irritable, that's what we call a good day. It's still horrendous to anybody else that might see it, we are just use to it already. But...it's what helps him and that's the way we have to see it. Hopefully if everything goes well we will be on our way home tommorrow and this time for 5 weeks hopefully. We can't wait. We are all Halloweened out. There were Halloween functions everyday and sometimes twice both in the clinic and then at the Ronald McDonald House. They had a blast, thank God. I was remembering how last year Freddy was supposed to be Batman and Joey Robin but Joey never got to dress up, we were already in the hospital. We are so greatful that God let him have fun this year with his brother. They were Batman, this year Joey was Batman and Freddy was Bat Ninja. They danced at the Halloween party. It was very cute and I have alot of pictures. How fortunate I feel to be able to have seen that!!!!Big grin on my face. Anyway, his lungs sounded a little gurggely, it's probably from the medications they give him that do that, sounds like he's under the water when he breathes but as the day goes on it clears up and he still has a very junky cough from the cold we all had. So...they think it's OK they are just going to give him more meds to clear the fluid and that should be it. I hvae to go in a few minutes, Fred is taking the first part when he's a little more docile and then I take over when he gets a little wackier. Mommies....what can I say? We understand them. Freddy wants some ice to eat, so gotta go. Talk soon,hopefully from HOME HOME. Love you all for praying and checking in on us. Linny
Sunday, October 28, 2001 at 11:26 AM (CST)
Well friends. It is Sunday and we are waiting and waiting for tommorrow to come around. Anxiously! As you know, we are a week behind. We were suppose to start treatment on Monday of last week but Joey ran a fever Sunday night and we couldn't start. We had to go to the hospital for a few days while they gave him antibiotics and cultured his mediport line to make sure it wasn't a line infection. He's doing great!!!! We really can't complain. He's been eating up a storm. He's into grilled cheese sandwiches and we supply them round the clock hot off the corner store every so often so it's available to him in case he wants some. He's also eating alot of corn Pops. He wakes up sometime after 6am and his first words after "PARA" which means stand up is "CornPop". How can we refuse at 6am to give him cornpops. And thus begins our day. Then Freddy gets up too, he wants "munequitos" cartoons. He'll usually wait until 7am to ask for breakfast and orange juice which Fred has to go downstairs to the common kitchen and get it. We have an assigned floor in the refrigerator. It works out fine. It's kind of having a two story house I guess. I don't have one but I imagine that's what other parents have to do except Fred has to look somewhat decent to come down HAHA. You know, no bed hair, caps work too. Anyway, we are waiting anxiously to start treatment tommorrow. In the meantime we've been to the playroom with the kids and they've done some Halloween stuff, painting pumpkins, making ghosts and witches and bats and masks. Mommy enjoys some of those crafty things too. The kids mainly sit for a little while and then....they're off and us behind them. We get to chat with some of the parents, compare notes, help others with our experience and just feel like there are other families out there like us. We are not the only ones suffering this terrible disease. Which, brings me to the GARAGE SALE the Moms Club of Pembroke Pines had for us this weekend. We heard that it was a HUGE success!!! We missed soooooo much being there. We were actually trying to make it back in time to participate. I Love Garage Sales, and what could I say when it's to benefit Joey and other kids with Neuroblastoma!!!! We really, really wanted to be there, but for some reason, God had other plans for us!! He did make sure that they had Great weather and a great turnout from what I heard. Many of our family members got emotional as they drove up to the sale. They said that they couldn't express what they felt when they saw what was being done out there for our Baby Joey!!!! Alot of our family went and helped out. I have to thank many, many people. Dawn Garber, which I have not yet met from the Moms Club. She put it all together and did and amazing job. Margaret, another Mom that helped Dawn out in her absence, Janet who helped me keep informed, Kerri who I'm sure did much before she went and delivered a baby boy last Sunday, I believe. And... all the other moms that I met and tooke the time to meet me and my family and made me feel so welcomed home!!!! I really have alot to thank God for in the mist of this tragedy. I also have wonderful friends and family. Tere, my long time friend, who as the years pass becomes a better and better friend to me (and actually teaches me how to be a better friend). She has stuck through everything with me. My cousin Maylen,who has also been through everything with me and kept my spirits up in moments that I truly needed. Irmy, my cousin in law. If I could've picked a sister on earth, I feel that she is that to me. She is so sweet and loving to me that I just thank God for her. All these people that have been there for me were at the garage sale, selling their little hearts out and, having fun, from what I heard. My Mom, the comedian, always entertaining everyone, they had a great time. I can't say enough about the event and I wasn't even there. I was kept up too the minute with pphone calls which I appreciated and looked forward to hearing that phone ring. We are really a lucky family to be blessed by all of you. Please, if I did not mention you know that I am so greatful that you were there and helped and cared. Other moms that I don't know, the businesses and people that participated, it's all thanks to all of you that gets parents like us with problems like these through the difficult times!!! I thank God that Joey is doing well and that He continues to give Joey life and hopefully in the near future, this disease can be curable, manageable so that children don't have to continue this suffering!!!! Your help and contributions really will make a difference!!!! Thank you all and I will keep you informed. Lots of love, Linny
Thursday, October 25, 2001 at 01:50 PM (CDT)
Hi everybody!!!! I'm so sorry I haven't written in a while. I actually tried twice and got booted out and didn't have the energy to do it again. Anyway, here goes, hope this doesn't get erased.
Since I last wrote, so many things have happened. Now I have to briefly summarize them because even more has happened.
First of all, we were able to celebrate Joey's 2nd birthday!!!! We were so happy!! Thank God that we have been allowed that privelege. We were at home with the family. Grandparents, aunts, uncles, and some of the cousins. We later on in the week were able to see more family. Mostly for short periods of time and sometimes outside. Joey shouldn't really be around too many people and especially if they are sick. But,, everybody promised they were not sick. It was great to be home in our own surroundings.!!!!
We were also able to meet the Pembroke Pines Moms Club who have been very supportive to me especially and are doing many things to help us raise funds for Joey's medical treatments. We had a great time and I hope that many friendships will continue from there. I can't say enough about these women that until a few days ago didn't even know our family. One of the moms was expecting and almost due and still found the time to help us out. So many of them have children and like most of us, don't have time yet have found the time. I really thank them and our family is thankful too. I on the other hand also thank them for the emotional support many of them offered me through emails during those very difficult days in the hospital. THanks again.
Another thing that occurred while we were at home was the Golf Tournament for Joey and for Families Fighting Neuroblastoma! It was a great success. Fred was able to participate as well and he had a great time. I'm sure it was the nicest thing he's done for a long time. He saw many friends that he hadn't seen in a long time and we thank everybody that participated for taking the day to share that with us. A special thanks goes to Scott Taylor and John Pena and Hector Ventura and Javi Vasquez for getting it all together. Another special thanks to Alex Fernandez for all the items he contributed for the auction and so many other people that sponsored items and food!!! We really appreciate everything that you have done for us. Not to mention, the hats and shirts came out great with the Families Fighting Neuroblastoma logo!!! We took Joey at the end of the day so that people could see him and just get out a bit. He had a nice time. It was nice to see our friends and family. I also want to thank the women that went. They helped out and
had some fun of their own. I would have loved to have been there but I had to take care of Joey. Hopefully next year, when Joey's better maybe I could be there too.
The next thing that's planned for Joey's fundraisers is the Yard Sale at Pembroke Lakes Mall in front of Burdines. That's this Saturday October 27th from 8am to 2pm. Hope you can all make it. Many people have bought tables but if you haven't you can at least go and see if you can get something. It should be a good turnout. Thanks to all the friends and family that got involved with that!!!
We are presently in New York. We are suppose to be doing a week of Immunotherapy but unfortunately we couldn't start that because Joey ran a high 102.7 fever on Sunday night and he was admitted to the hospital to bring the fever down and to find out if it was something serious like a line infection from his mediport. It wasn't thank God. We stayed Monday through Wednesday at the hsopital and were discharged yesterday. We now have to wait until Monday to start his Immunotherapy. So we'll be back a week later than expected. We can't complain. We look at it this way, we rather be here for antibiotics than for chemo and we rather be in this hospital than back home. They already know everything about him here. We trust everybody here. It was kind of creepy to be back in the hospital. hadn't been there since Joey's tranpslant and I really hate sleeping there. But at least the stay wasn't long.
So...we will be here until Saturday
Nov. 3 we hope and then we'll be going back home for about 4 or 5 weeks. During that time he'll be on the 2nd oral chemo sycle. He's been eating a little better. The choice at the moment is Grilled Cheese sandwiches. That works. He's eating them all!!! We are very excited about that!!!
We'll be having Halloween here. We heard the clinic has a nice party and all the nurses dress up. It'll be fun. We just got Joey a batman costume and Freddy will be an Ice Wolf Ninja. Tio Jorge is shipping his much awaited costume. He's been really excited to wear it. Our pumpkins are sitting on our counter at home. So, we'll be the only family carving pumpkins in November. Hey, what can we say? No carving pumpkins? No way!
Well, thanks for keeping in touch, Sorry it took so long. Keep coming back please we love to hear from you. Please keep Joey in your prayers. His scans and tests are all clear thank God but we still need your prayers to continue the healing. His treatment is still a about another 2 years.
Thank you and God Bless you. Be safe for Halloween. Love, Linny
Friday, October 12, 2001 at 01:15 PM (CDT)
Well, as you can tell we have been very busy and very intertained to be back home. We arrived in Pembroke Pines on Sunday after a leisurely drive from Daytona Beach. We stopped the last night at Daytona Beach and the kids wanted to get off on the beach. You can drive the car onto the beach there so as we were driving they wanted to get off of course, how silly of us to think differently. We all got off and walked on the shore, they had a great sand bar leading out into the ocean. You could walk for quite a while and it was only ankle deep. Joey was excited to feel sand under his toes and enjoyed the water on his feet too but was hesitant to go deeper. He'd ask me to carry him and he'd hang on to my neck tightly. Freddy on the other hand ran into the waves and got entirely soaked and had a great time. He ran with his father along the edge of the shore and would jump into the waves. It was so shallow he barely noticed he doesn't like water on his face. He even drank a little slat water but he thought that was funny!!!! Even my Mom waded into the ocean. It's been well over a year that we had seen the beach. For those of us who live here in Florida, Oh the things we take for gratned. The following morning we took them out to the beach again and they dug with shovels and and little pails and I took a roll of pictures of them and us and we had a great time again. Then we had to check out so we had to leave but it was Oh so worth it!!!! We finally arrived home on Sunday afternoon. We had our parents over and the grandparents spent some time with the kids, some of the cousins came over too and they saw each other, they've grown so much and they played a while together. We made sure nobody was sick and they stayed for a little while. Freddy was very excited and Joey was happy to see other kids. The cousins were happy to see them too.
Since then we've been trying to adapt being home. The kids want to be outside all day if possible. They want to be in the back with the swing set or out front just waling around or around the block in their wagon. It's so great to be back home!!!!!We have so much to be greatful for!!! Thank God He let us return home with both our children and our family together.
On Tuesday we met Joey's new Doctor's, the Oncologist at Joe DiMaggio and we were very happy and pleased. He has wonderful bedside manners, the staff and nurses were very nice, the Doctor trained at St. Jude's which is very well respected for childhood cancer and I believe the 2 other doctors trained at CHOP. They just did a CBC, finger prick, they used this ice spray thing, but he still cried, he hates the finger stick and his counts were fine. They will just be checking up on him weekly to make sure that he doesn't need blood or platelets. He'll also need an antibiotic every 2 weeks through his port so we'll be doing that there as well.
Let's see what else, Freddy will be starting school on Monday. We met his teacher today and she is very nice and his classroom is big and spacious and he should have a lot of fun there. I hope he does, he's missed out on fun for a whole year. Freddy also started playing baseball. His team is called the Texas Rangers and he's already been to one game and one practice. He seems to like it OK. He complains a little but he doesn't give me a hard time while he's getting dressed. So, I think he likes it OK.
Joey is still thin and barely eating. He eats so little, a little bagel here, a little bagel there, I make bagels the whole day with butter. He wants a new one everytime, but it's the only thing he really eats so I keep making them fresh in the toaster and then he only nibbles a few bites. He's been eating some cheese lately and drinks a little coke. I know it's a terrible diet but what can I do? We buy him and give him everything we eat and he refuses most of the stuff. I make him pasta, he tastes it once and thats it. He'll eat some fried but no hamburger or chicken. He might try a little bit of pizza. I hope and pray he'll eat more. I hate to see him so thin. He has no butt. He has two little pieces of skin on his butt bones. Please help me pray about that. That his appetite increases. He just stopped the oral chemo about 2 days ago, and he'll have a week and a half break until he has to take it again so maybe he'll get some taste and appetite back. I hope so much!!! In the meantime we are all eating his leftover opened prepared food and we need to loose weight. What a dilemma. Oh well, the important thing is that he eats. We'll deal with the other stuff later.
Fred started working on Wednesday. He really needs to get the office going. We need to pray about that too. Hopefully he'll be able to pull it up and be able to keep it. Dr. Erika Martinez and Gina his dental assistant have been such a great help to us, we know that had it not been for them, there would be no office to return to. So, we thank them from the bottom of our hearts for sticking through this with us.
Joey's tests all came back clear, Thank God. The only thing they said that concerned me was that the urine test was slightly elevated. The catecholamines from the urine test. I think that when there is a tumor there are more catecholamines in the urine, but other than that I don't know what that means. All the other tests are clear so Fred assured me that I should not worry until they do the urine test again on the 22nd when we go back. They want to redo it to see if maybe it was a mistake somehow or something. Let's hope it was a mistake and pray that there is nothing to worry about. So, please continue to pray for our little guy. We love him so much and the more days pass by the more we love him. Please pray that God allows him to remain cancer free and here with us!!!!
Thank you for your continued love and prayers. Don't forget about the golf tournament coming up October 19th. It seems to have picked up speed and it'll be a great fun time. Also, the garage sale on October 27th from 8am to 2pm at the Pembroke Lakes Mall in front of Burdines. If you need more info just call me, we are home now 954 442 7805. Thanks. Check out the guestbook.
Thursday, October 04, 2001 at 09:41 PM (CDT)
Hi everybody!! I wasn't going to write today, I'm a bit tired but I couldn't help it. I'm excited and I know all of you that are keeping up with Joey's progress are excited and I couldn't contain myself from writing.
We are in Virginia on our way home!!!!It's almost unbelievable. It's almost like we are going back tommorrow or the next day. It felt a little weird being away from Sloan Kettering today. Like 5 hours into the drive today I felt like, Oh my God, we are really far from the hospital. I know Joey should be fine but it just feels a little scary, should he need anything, my security blanket is missing. Fred wanted to drive through some Blue Ridge Mountains out here and I'm like, let's just get home so we can be close to a hospital in case Joey needs something like blood or platelets or something. I can tell this new stuff is going to take some getting used to. It's nice but different. We've been so attached to that hospital. We usually are there, if not every day then every couple of days but usually never more than like a week. SIGH!!!
Eveything went well on Wednesday, he did the scan well and I did not look at the images on the screen because if you've been reading the journal you know that last time he had the MIBG done I had a fit because I saw something light up and I thought it was the disease. Now I just am not going to look at it and trust that GOD is taking care of it. That's all I can do. All the other tests came back Clear already so that's a very good sign that this last one will be too.
We drove for about 6 hours today and the kids were fine. We stopped after like 3 hours, Joey tooka nap during that time so he really wasn't up so long. We stopped for lunch at a Burger King that had outside tables which was good because Joey can't be in a inside area with other people where he might catch like a cold or something. He was pretty freaked out. He barely knows that there's an outside world other than his apartment in NJ and Sloan Kettering. He left home so small he didn't get to experience too much. He kept pointing around and walking around, very excited. He's kind of eating a little more. He just had fries, some and a little bread with mayo, he tought it was butter. Oh and some Coke. I know it's terrible but how do you tell a kid that only drinks water that he can;t have coke? Let me know if you have a suggestion. Could be why he didn't want to sleep tonight. Tommorrow he'll have to have his coke decaffinated. He's been real funny lately. His personality is coming through more and more. He's going to be a little jodedor, that's spanish for....I'm not sure how to translate that....joker? He was talking up a storm on the phone here in the hotel room. We were cracking up, he was just mummbling up a storm. It was definitely the caffeine. He says YEAH when he gets french fries or sees McDonald arches. He's asking CASA? like where is my house? He tells me he's Daddy's or Freddy's or grandma's but not Mommy's. Noooo. He likes to get a rise out of me. He smiles and puts a little mischievous face when I tell him no and then he does it anyway. Oh well, I will let him push me around quite a bit.
As for Freddy, he's learning alot about the States we are driving through. Just before we came out we played a few days with a states puzzle so he gets the concept that we are going through different states to get home to Florida. Thank God for the video player in the van!!!!! What did we do before those existed??? Anyway, we hope to be home around Sunday.
We are very excited about the fundraisers being put together for Joey's benefit and for Families Fighting Neuroblastoma. We can't thank the people enough that are making it possible. The golf tournament seems to be taking shape nicely. A meeting was held and alot got done and resolved. From what I understand we are getting several big sponsors so it seems like not only will it be for a good cause but it'll actually be very fun and worthwhile for the participants. Please tell as many people about it as you can. The contact person is Scott Taylor and his number is
(305)610-4559. I got an email from one of my cousin today that she will be involved too which made me very happy to know that the women will be represented as well!!!
That will be held on October 19th, 2001 at the Fort Lauderdale Country Club at 8:30am.
A little further down the road is the Garage Sale that will be held at the Pembroke Pines Mall and the contact person for that is Dawn Garber at (954)392-1497.
That will be held on October 27th at 8:00am to 2:00pm. It's a great chance to get rid of some stuff you've been meaning to. The spaces are $25 for a table and 2 chairs. Most of that money goes to the fund as well as anything else you want to donate. I believe the exposure will be great to sell whatever it is you have. So...hope you can get out there, whether it's to sell your stuff or look around. Don't forget to tell others.
Joey has really been fortunate in so many ways that although this tragic thing has occurred to us, especially to him, he is very blessed and we have to thank God every day that he allows us to be with him and experience all the good that people have to offer. May GOD Bless all of you that have taken an interest in Joey and his disease and Thank You for being supportive for us. It really keeps us looking for the brighter days and the good rather than the bad.
The fashion show/ auction is also being scheduled for February 23, 2002. So although it is a little further away just keep the date in mind. The location has been determined that it will be at the Signature Grand in Davie I believe. Once the Golf Tournament and the Garage Sale are past us we will be concentrating on that. I believe that they are looking for auction items so please keep that in mind also. If you would like to donate an auction item or can make a corporate donation please contact Kerri at (954)441-0945.
So...get excited with us!!!!!We really need your help and it seems like its gonna be fun too.
We love you for caring and for praying and please also pray for baby Luke who's in transplant and is only 1, smaller than Joey. May God get him through this and let him be well. Please pray that God continue to heal Joey every day!!!
Thanks, we love you and as you can tell I'm very emotional about going home!!! Check in with us tommorrow, let's see where we get to tommorrow. Love, Linny
Tuesday, October 02, 2001 at 09:39 PM (CDT)
Hello everybody. Today we are tired. It's been 2 long days at clinic. We think it's going to be quick but...it doesn't end up that way. Monday Joey had a bone scan injection and then a bone scan with sedation. He did well, it's just the waiting while he can't eat and now accessing his mediport. It's in the front now where they get access to his intravenous line so he's looking straight at what the nurse is doing. He did well but we got home really late, he had to get blood, his blood count was low. That took like 2 hours. Then today he was able to eat because all we thought we were going to do was give him the MIBG shot, which is done at the hospital because it's some type of nucleur medicine thing they inject into his tubie and then it shows up the following day on the MIBG scan. It's suppose to light up the Neuroblastoma. Hopefully, with GOD's help nothing will light up. But anyway, we thought we were only going for that and then it turns out he has to get Pentamidine, an antibiotic he has to get every 2 weeks and they needed a urine collection. That's a pain. They have to place a very sticky material around his pipi and then stick a bag around his pipi so that he pee's into that tube that hangs down his leg and opens up into a bag. He has to wear that for a minimum of 4 hours so we couldn't leave until he did that. Thank God we were able to play in the playroom a little while. Freddy went with us today. We thought it was going to be a quick day, but as it turns out many times, it wasn't. But Freddy had a good time. The playroom was making some magic wand things and we told him it was a Harry Potter magic potion thing. He likes that toy they announce on the TV about the Harry Potter potion. So, he was excited.
We do have some great news!!!! His bone marrow was CLEAR and his CT scan was also CLEAR!!!! THANK YOU JESUS!!!! THANK YOU GOD!!! We knew that it would be. SO, all we have left tommorrow is the MIBG scan and then I think we are gone. The movers are coming tommorrow to take our boxes and the Salvation Army is taking the furniture we were unable to sell. So we have a busy day tommorrow. We will probably sleep home in NJ one more night and head out to Miami on Thursday. That's the plan for now. Hope GOd will help us do that.!!!! Don't forget the golf tournament to benefit Joey contact Scott (305)610-4559. It's scheduled for October 19th. Also, the Garage Sale, October 27th contact Dawn Garber (954) 392-1497.
Thank you for checking in and thank you for your continuous prayers!!!!! God Bless You Linny
Friday, September 28, 2001 at 10:02 PM (CDT)
Hello friends. Today is Saturday. Joey is doing well. I removed his bandages from the bone marrow aspirations that were done on Thursday. He gets pinched in 4 areas. 2 in the front in the groin area and 2 in the back in the hip area right above his butt. He was sore all day Thursday and part of Friday. Today he was better. We ahd to give him Tylenol Thursday night because he was saying YAYA. He didn't even move positions through the night because he hurt. Poor baby. He's also not eating as much as he was. He's not eating any of the pasta or macaroni that he was eating before, Or cheese or ice cream. The last 2 days all he eats is chips and Rice Crispy cakes. He's really thin. I'm beginning to worry about that a little. He has knobby knees and his shorts are kind of falling down off his butt. We think it may have to do with the oral chemo he started. I'm sure it affects appetite and taste. THat must be why he doesn't want to eat as much. It's kind of scary because he has to take it for 21 days for 4 cycles. He needs to eat more. Other than that we have to wait to get the results from his tests but we are confident that they will be clear, with God's help. We are excited about going home next week. We are packing every day little by little to keep busy. Freddy is very excited!He loves his brother alot and prays to PapaDios to heal his little baby.
In the works is the following:
Families Fighting Neuroblastoma Golf Tournament
October 19th, 2001
Fort Lauderdale Country Club
8:30am
Contact: Scott Taylor (305)610-4559
John Pena (305)828-0219
They will be having a meeting on Tuesday October 2 anybody interested should contact them.
Also....Moms Club of Pembroke Pines
Yard Sale to benefit
Families Fighting Neuroblastoma
Saturday October 27th, 2001
Pembroke Lakes Mall Parking Lot
East Side across from Burdines
If you would like to sell stuff the space is $25 which include one table and 2 chairs. For information and to reserve a space contact Dawn Garber at (954)392-1497
Even if you don't want to sell stuff, please try to spread the word for others to go and shop!!!!
So,,,, we are excited about everything people are doing for us and for Joey and we hope that you could get involved too.
Thanks for your support and for continuing to check up on Joey's health.
Please say an extra little prayer for our friend Baby Luke, just 1 year old that entered transplant 2 days ago. He has a tough time ahead but prayers can certainly help him through.!!!!Talk soon. Linny
Wednesday, September 26, 2001 at 09:12 PM (CDT)
Well, we are back to clinic tommorrow. Today we took Joey's front bandages off. He still has the stery strips but he got showered with his brother for the first time in almost a year. The last time Freddy and Joey were in a tub together was probably October 15th last year, right before he got diagnosed. I use to shower them both together to do them quickly once rather than twice and they use to have fun together playing in the tub. Freddy missed that alot. He always wanted Joey to shower with him but Joey couldn't because he had the tubies and I was afraid they'd get wet and sometimes kids get line infections and its a big deal because they have to go back in to surgery to put a new one in etc. So, I just never showered them together any more. So,,, to say the least, today was a special picture tub day for us!!!!! Joey had a great time. It's funny that he hated to shower by himself, he'd cry and fight and scream and today he just went in like he's been doing it every day like that. He even got the cup I use to wash Freddy and poured water on himself. He missed once and got some in his mouth and he kind of didn't like that too much. He made me wipe his face but he was OK again and kept playing. When I took him out he kept looking around like this is going to quickly, don't we have to do other things like pin me on the back, the tubies to the shirt? Change my dressing on the back? He knew something was different today but definitly better. Much better. Oh the little things we take for granted.
Tommorrow he will get pinched in his new mediport on the front. Let's see how that goes. I am not looking forward to it. He still has the stery strips there, I guess they'll have to take them out I'm not quite sure. I'll worry tommorrow. He can't eat again after midnight tonight because he has a CT scan at 12:00noon and then a bone marrow aspiration at 12:30. Once he wakes up he can eat. He hasn't been eating much these last couple of days. I hope it's just a reaction to the radiation because he had been eating pasta and cheese and now he only wants to eat chips again and rice crispy cakes. He makes me make popcorn but doesn't eat it. He's barely eating icecream no cheese. He's got to eat more. We are going to ask the doctor about that eating Periactin thing to see if it can open up his appetite. Let's see what they say tommorrow.
Please mark your calanders and contact Scott Taylor at (305) 610-4559 if you are interested in the Families Fighting Neuroblastoma Golf Tournament to benefit Joey. It is going to be held on
October 19th, 2001 at the Fort Lauderdale Country Club at 8:30am. Tell others about it too. THanks for checking in on us and Thanks for keeping Joey in your prayers. All praise goes to GOD for keeping our Joey with us!!!
Tuesday, September 25, 2001 at 10:02 PM (CDT)
Hello friends and family!!! Joey is doing very well. He hasn't thrown up today. He threw up once yesterday. It could be his counts are going down a little because of the radiation from last week or it could be the oral chemo he's taking. It really isn't a high dose but I guess it is chemo. He has to take that for about 4 months, 4 cycles of 21 days. He's also taking some anti fungus medication. Acyclovir. That's 2 times a day, morning and night. He cries when we give it to him but only for a second and then he's OK. We took his big bandage off of his back today. It kind of pulled a little but he was OK. Daddy sang, "Tickle, tickle, tickle...." while he tried to remove it with this little oily thing. Now he only has some stery strips about the size of a half dollar on his back. But, those will fall off by themselves. We left the one on the front today because we didn't want to bombard him taking stuff off. We'll attempt the front tommorrow. That's where they put the mediport in. He's got like a bump underneath the skin cuz the metal mediport is underneath there. Anyway, he's also not eating as much. We are going to ask the doctors again if we can give him something to open up his appetite. They already told us they didn't want to do that once. We'll see what they say on Thursday which is when we need to go back. Thursday they'll do a blood work up and look at his counts and he's going to have a CT scan and a bone marrow aspiration test. These are the tests he gets done every 3 months to make sure everything is clear. It just seems like he had them the other day. Poor baby, they're always poking and bothering him for something. He gets out of one thing and then gets into another. The CT scan is OK because all he does is get sedated, of course he can't eat or drink before but the bone marrow aspirations hurt and he gets sore for a day or two. I hate those!!!!Anyway, I know GOD will make them clear and he'll be OK. I know that GOD has healed him and his tests are all going to come back clear.!!! Then next week we have the rest of the tests.
On a different note, I was asked by out friend Scott Taylor to please post this information on the web page. He along with our friends John Pena and Hector Ventura are trying to put the Golf Tournament together as a fundraising effort on Joey's behalf. They have reserved October 19th, 2001, this year, in a couple of weeks at the Fort Lauderdale Country Club at 8:30am. Scott asked that I give his number (305) 610-4559 for anyone that is interested in participating, not only in the tournament but also to sponsor with their corporation. He mentioned needing sponsors for the drink carts, for the shirts and lunch. Each one of those sponsors would be approximately $1000. Also the charge per player will be $100 or $500 for corporate sponsor which will get a 4-some and a sign on the golf course.
Please contact Scott and tell others, of course the more participants the more successful the event. We know that many friends want to help and this is definetly one way you could do that. It should also be a very fun event, not to mention, you get to golf!!! Thank you for anything you can do!!! Thanks Scott, John, Hector and all the other people that are involved trying to make this a success for Joey!!!
We hope to be there for that special event and Daddy will be participating hopefully with all of you.
Keep checking in on us we have more great stuff planned for Joey!!!!
Friday, September 21, 2001 at 08:56 PM (CDT)
Well Joey's Tubies are out!!!!! We are very excited although Joey probably doesn't know what is going on. He had them on his back and he did get a glimpse of them once in a while when we change his dressing and he knew that something was back there that was a bit uncomfortable and very uncomfortable and ackward when he took a shower. Other than that he probably thinks everybody has one of those or they come with the body. I cried to think that I can finally hug him and touch his little back without having to worry about hurting him or pulling something back there. Also, I can't wait to hug him tight and touch his back all over. It's those little things we take for granted!!! Kissing his little back.
Anyway, he's pretty sore today. They took the tubies off but had to place the mediport in. That will be the new way he gets the medication when he comes once a month for treatment. It was reccommended because he's still so little and it's difficult to get a vein to put an IV on him and he will need it to get the medication.
He got a break with the oral chemo today and was able to skip 2 doses because he got to the hospital at 6:45am and couldn't have naything to eat or drink prior to the surgery so he couldn't get the morning dose and then we he went in at about 9:45am to the surgery he didn't come back out until about 1:00 pm and then didn't wake up from the anesthesia until after 2:00pm so we couldn't really give him the afternoon dose either. He woke up in pain and they had to give him pain medication. He is really strong considering how skinny he is right now. Only 21 lbs. He should weigh about 27lbs. That's the 50th percentile weight for a 2 year old. We have some work ahead of us. This oral chemo though may give us a little bit of a hard time. He really hates it. The taste has to be nasty. He spits it back out and we try to make a funnel of his cheecks so he doesn't spit it out but he's just gotten too smart and sticks his tongue out so it spill back out. Anyway, he has to make up the missed doses at the end after day 21 so he dosn't really get away with not taking them, he just a break today. We did have to give him the night dose and some Tylenol with Codeine for the pain because he was saying "YAYA" that's what he says when something hurts. He didn't use to be able to express to us that something hurt him but now he can. I guess there is some advantage that he's so small that he can't really complain too much rather than cry but it's also bad because we don't know what hurts and have to guess at what may comfort him. It's just very difficul to hear kids express their pain and that there's nothing that can be done. Today we shared a room with a little boy who's 4 and also has Neuroblastoma and he was getting Immunotherapy treatment and he was in pain and crying and tellin his Mommy,"OOW it hurts, that's not being nice. I'm very sad because it hurts. I'm very sad. " Another day a little girl also getting the Immunotherapy told her Mommy, "My Mommy doesn't like me, my Mommy is mad at me because she doesn't want to help me." It really breaks your heart to hear them express pain. Joey, poor baby can only cry and wriggle and try to desperatly push me away and get very aggravated but he can't tell me what he feels. Just recently he can say YAYA and today he even showed me where it hurt and he touched his chest.
On a brighter note, he is doing very well. We dont have to go back to the clinic until Thursday which is the day that he's scheduled to get a Bone Marrow aspiration test and a CT scan. We have to go through the barrage of tests before we go home. We are shooting for October 4th. We are most probably going to drive home. We changed our mind because after we sat down and compared what our options were and how much each cost and that we would have to be separated a few days we decided that we would drive home together so that the car can get back home and we will ship the boxes. That way Daddy can be with us and we won't have to stay home without him while he travels to bring the car back. Also we will have plenty of days to drive home so we can take as long as we need for Joey to be comfortable. It's about a 24 hour drive so we will probably divide it into 4 days of 6 hours and stop after every 2 hours. We'll see how that works. I hope OK. That way we won't have to fly so soon while all this stuff is going on too. We like to stay together so we think this will save us money and we will be together.
Hopefully then we won't have to be back until October 22 which will be the next Immunotherapy treatment. We get to be home at least 2 or 3 weeks. It will be very nice to be home!!!!! We are all very excited.
Thanks for checking in and remember that we have several fundraisers in the works to help pay for Joey's treatments. I will keep you posted as soon as I get information. There is an October 19th golf tournament, an October 27th garage sale, and a February fashion show/in the works. So keep coming back for the info. We appreciate any support!!! Thanks. Lots of love.
Friday, September 21, 2001 at 08:56 PM (CDT)
Well Joey's Tubies are out!!!!! We are very excited although Joey probably doesn't know what is going on. He had them on his back and he did get a glimpse of them once in a while when we change his dressing and he knew that something was back there that was a bit uncomfortable and very uncomfortable and ackward when he took a shower. Other than that he probably thinks everybody has one of those or they come with the body. I cried to think that I can finally hug him and touch his little back without having to worry about hurting him or pulling something back there. Also, I can't wait to hug him tight and touch his back all over. It's those little things we take for granted!!! Kissing his little back.
Anyway, he's pretty sore today. They took the tubies off but had to place the mediport in. That will be the new way he gets the medication when he comes once a month for treatment. It was reccommended because he's still so little and it's difficult to get a vein to put an IV on him and he will need it to get the medication.
He got a break with the oral chemo today and was able to skip 2 doses because he got to the hospital at 6:45am and couldn't have naything to eat or drink prior to the surgery so he couldn't get the morning dose and then we he went in at about 9:45am to the surgery he didn't come back out until about 1:00 pm and then didn't wake up from the anesthesia until after 2:00pm so we couldn't really give him the afternoon dose either. He woke up in pain and they had to give him pain medication. He is really strong considering how skinny he is right now. Only 21 lbs. He should weigh about 27lbs. That's the 50th percentile weight for a 2 year old. We have some work ahead of us. This oral chemo though may give us a little bit of a hard time. He really hates it. The taste has to be nasty. He spits it back out and we try to make a funnel of his cheecks so he doesn't spit it out but he's just gotten too smart and sticks his tongue out so it spill back out. Anyway, he has to make up the missed doses at the end after day 21 so he dosn't really get away with not taking them, he just a break today. We did have to give him the night dose and some Tylenol with Codeine for the pain because he was saying "YAYA" that's what he says when something hurts. He didn't use to be able to express to us that something hurt him but now he can. I guess there is some advantage that he's so small that he can't really complain too much rather than cry but it's also bad because we don't know what hurts and have to guess at what may comfort him. It's just very difficul to hear kids express their pain and that there's nothing that can be done. Today we shared a room with a little boy who's 4 and also has Neuroblastoma and he was getting Immunotherapy treatment and he was in pain and crying and tellin his Mommy,"OOW it hurts, that's not being nice. I'm very sad because it hurts. I'm very sad. " Another day a little girl also getting the Immunotherapy told her Mommy, "My Mommy doesn't like me, my Mommy is mad at me because she doesn't want to help me." It really breaks your heart to hear them express pain. Joey, poor baby can only cry and wriggle and try to desperatly push me away and get very aggravated but he can't tell me what he feels. Just recently he can say YAYA and today he even showed me where it hurt and he touched his chest.
On a brighter note, he is doing very well. We dont have to go back to the clinic until Thursday which is the day that he's scheduled to get a Bone Marrow aspiration test and a CT scan. We have to go through the barrage of tests before we go home. We are shooting for October 4th. We are most probably going to drive home. We changed our mind because after we sat down and compared what our options were and how much each cost and that we would have to be separated a few days we decided that we would drive home together so that the car can get back home and we will ship the boxes. That way Daddy can be with us and we won't have to stay home without him while he travels to bring the car back. Also we will have plenty of days to drive home so we can take as long as we need for Joey to be comfortable. It's about a 24 hour drive so we will probably divide it into 4 days of 6 hours and stop after every 2 hours. We'll see how that works. I hope OK. That way we won't have to fly so soon while all this stuff is going on too. We like to stay together so we think this will save us money and we will be together.
Hopefully then we won't have to be back until October 22 which will be the next Immunotherapy treatment. We get to be home at least 2 or 3 weeks. It will be very nice to be home!!!!! We are all very excited.
Thanks for checking in and remember that we have several fundraisers in the works to help pay for Joey's treatments. I will keep you posted as soon as I get information. There is an October 19th golf tournament, an October 27th garage sale, and a February fashion show/in the works. So keep coming back for the info. We appreciate any support!!! Thanks. Lots of love.
Wednesday, September 19, 2001 at 09:29 PM (CDT)
Hi Friends and Family!! Today was a good day. We are home in NJ. It's great to be home, although it's not home home but it's much roomier and has all our stuff or alot of it. Joey is doing very well. His radiation went very well. He really didn't have many problems. He threw up on Thursday and Friday only and that was probably because he hadn't eaten until after 2pm and then he wanted to eat everything he usually does within an hours time span. Chocolate, chips, pizza...but he was OK again over the weekend. He was able to eat the whole weekend although he really doesn't eat so much. He pretty much just picks at little things here and there. He gets a favorite thing for a few days and exhausts it and then never wants to see it again. The new thing was Rice cakes, the chewy sweet ones, now he doesn't want anything to do with them again. He's back to popcorn, popcorn,popcorn. We must make about 12 bags a day and he barely eats any of it. He makes everybody else eat it. Then he wants to see a new bag pop. We are all under his control. I know it's bad to spoil him and we try not to but poor kid has been through so much, what's a few bags a popcorn anyway? How about I have to take him out into the hallway of our apartment every time he wants to to play out there.? Or I have to go to the kitchen and give him something he wants but doesnt' eat about 100 times or more a day? That's what our day consists of here. But sure beats being in the hospital. We feel so happy that this part of our lives is finally coming to an end and we can move on to a different part. Hopefully enjoy life a little more and get away from so many hsopital days!!! With GOD's help we hope that there are much better days ahead for Joey and our family.
Anyway, Joey's tubies are finally coming out on Friday. That was the day that Dr. LaQuaglia could do it and that's who we want to do it. He's a Godsend and we really trust him with Joey!!! Thank God for that Doctor that was able to remove Joey's tumor when others said it couldn't be done!!!! That's pretty scary that Dr.'s in Miami never mentioned to us that other Dr's were performing these surgeries and led us to believe that it could not be done and yet after we investigated there was a surgeon that could do it!!!! How many other parents out there are being mislead and don't have the resources or time to find out invaluable information to save the lives of their kids!!!! It's just unbelievable. We just thank God that He led us here and that Joey has done well so far and hopefully we have done all we can to give him the best fighting chance.
Before I tell you what Joey's new schedule is for the coming year I just want to tell you that Freddy was able to see a live musical; Lion King. They gave us some tickets while we were at the Ronald McDonald house and Fred thought it was a great opportunity because they are very expensive tickets. We decided to take him so that he could see a live theatre performance, that's like once in a lifetime thing. It was pretty appropriate too because it's Lion King!!!! We decided I would take Freddy with my Mom and that Fred would take care of Joey. I guess Joey could have gone but we've just been so careful with him about getting sick and not getting exposed that we decided it was better he wouldn't go. He's pretty little too and he probably wouldn't know what was going on. Now after the fact, I'm glad we didn't take him because the streets are packed and the place was packed and really tight lines and very close prosimity to people. Freddy had a great time. I thought he might get bored but I was wrong. This wasn't Wimzy's house where he was interested in playing with the kids around him more thanhe was on the show. His attention was captivated throughout the entire thing. Pretty remarkable. The play was really sensational and I don't know if I was emotional because it was the first play I have every been to or if I was emotional because it really was so good or if it was because of everything that's happened here in Manhattan and that these people can try to get beyond that and continue entertaining us when our hearts are really down!!! The little boy that plays the part of Simba couldn't be more than 10 years old and his eyes were watery when everybody gave the cast a standing ovation. I'm really glad I got to experience something nice in NY for a change!!! I must tell you though that my heart felt heavy as we made a line to get into the theatre and they were taking longer than usual because they had to check purses and bags. So many people in one place. It was a little scary but you just have to go on!!
So....Joey's schedule. We have next years schedule and what and when we have to fly back for treatment. Here it is;
Oral chemo (21 days) 9/18 to 10/08/01
3F8 (5 days) in NY 10/22 to 10/26/01
Oral chemo (21 days) 10/29 to 11/18/0
3F8 (5 days) in NY 11/26 to 11/30/01
Oral chemo (21 days) 12/3 to 12/23/01
3F8 (5 days) in NY 12/31 to 1/4/02
Oral chemo (21 days) 1/7 to 1/27/02
3F8 (5 days) in NY 2/4 to 2/8/02
Accutane (14 days) 2/11 to 2/24/02
3F8 (5 days) in NY 3/4 to 3/8/02
Accutane (14 days) 3/11 to 3/31/02
3F8 (5 days) in NY 4/01 to 4/5/02
Accutane (14 days) 4/8 to 4/21/02
3F8 (5 days) in NY 4/29 to 5/3/02
Accutane (14 days) 5/6 to 5/19/02
3F8 (5 days) in NY 5/27 to 5/31/02
Accutane (14 days) 6/3 to 6/16/02
3F8 (5 days) in NY 6/24 to 6/28/02
Accutane (14 days) 7/1 to 7/14/02
3F8 (5 days) in NY 7/22 to 7/26/02
3F8 (5 days) in NY 8/19 to 8/23/02
3F8 (5 days) in NY 9/16 to 9/20/02
So.....as you can see we still have a long road ahead of us but a much easier road than what we've traveled. The oral chemo is just given to him like a normal medicine you would give any child. It's by mouth 3 times a day for 21 days. He takes a week break and we have to come back to NY for the Immunotherapy. He takes another week break and starts the oral chemo again. There are 4 cycles of the oral chemo. Then when those 4 cycles are done we start Accutane. I believe that's also oral, not sure yet how many times a day. That's the same Accutane they use for skin problems. We've heard that that one cracks the skin like around the lips and the skin might get red and peely or flcky and itchy. Some kids bleed a little with that because the skin cracks. The oral chemo is suppose to be pretty mild, I guess compared to what he's already gotten it's not very harsh but the nurse told us that if he's spitting it out we may want to wear gloves so we don't get exposed to it!!!! Doesn't make me very comfortable giving it to him, it's like a poison, but I have to continue to focus on the fact that if it weren't for these harsh chemicals he might not be here with us today and although they kill cells and destroy alot of his little tiny fragile body they also help him kill the cancer cells that could kill him. It's really difficult to rationalize that!!! But we have to do our part so that GOD can do his. I must say that this is certainly the hardest thing I know I have expereinced in my life and I hope to GOD that this is the worst of it!!! I thank GOD every day that He has given us the strength to get through this. Now as I look back, which I rarely try to do, it's been very difficult and heartbreaking to see my little beautiful baby boy suffer so horrendously and have to be there through it all and not be able to save him from the pain!!!!SIGH!!!!THANK YOU GOD for getting him through this!!! Thank you for getting us through this. I really didn't know I had it in me. I believe that saying now, "What doesn't kill you makes you stronger!" I am definetly stronger in a strange kind of way. I have GOD present in my life now and that gives me hope that He is in control of Joey's life and I know He gave Joey to me to take care of and love until He deems Joey needs to be on this earth for the purpose that he needs to be here. That's what gives me strength. And I do believe that there has to be a better place than earth and that's heaven and one day we will all be there again together. No pain. But, enough of that depressing stuff. JOEY is doing great!!! We have to work on plumping him up.
Other than that, if at some point Joey develops HAMA which is that his body starts producing that anibody by itself then we do not have to travel to NY for the 3F8's. So, that's something else to pray about. They tell us that after 4 3F8's is the ideal time to get HAMA. They (the doctors) really don't want him to get HAMA too soon. There's something about getting it too soon that's not suppose to be as good. Joey's already had 2 post transplant and hasn't gotten the HAMA yet, so here's to 2 more.
Did I mention that he's already past the 100 day mark post transplant? Well he is he's like 105 days or somewhere around there. That just means that he doesn't have to wear a mask around people any more. We still try to wear it. He kind of doesn't mind it too much. He's kind of gotten used to wearing it when he has to be around people like at the clinic. It's kind of cute. He tells me "Mask, mask" when he wants to go out. HAHA! The not so funny part is that Mommy has had to wear it too so that he wears it and it's kind of like a joke around the clinic that I wear a mask. Sometimes he takes it off and I'll still be wearing mine.
So, I've given you all alot of information. Sorry it took so long. But there's a lot going on.
We are hoping to be home like the first week in October GOD willing.
I will update you on any fundraising things I hear about and THANK YOU so very much for continuing to support us. Please lets not forget to pray for all the families that have been affected by the Twin Tower attacks!!! I hate to think of all the little kids that have been left without a Mommy and a Daddy!!!
I Love You Guys!!!!!! Thanks for caring. Don't forget to sign the guestbook!!!!
Monday, September 17, 2001 at 03:24 PM (CDT)
Hi everybody. So nice to be here able to write to all of you. We must all consider ourselves fortunate to be on this earth. Anyway, Joey is doing great!! We saw the doctor, oncologist today and he expressed how happy he was to see Joey doing so well. He really lifted our spirits and makes us happy to know he feels Joey is doing so well! He is thin, but we can work on that later. The radiation treatments have hindered his eating somewhat. He can't eat until after the second session which is after about 2:30pm. Poor baby. We don't eat either to know how he feels and
it isn't easy to not eat for so many hours, believe me. If you don't, you try it and think about Joey. It really stinks. But, thank God tommorrow is that last day of radiation. Then, his Broviac, (tubies) are finally coming out on Friday because Dr. LaQuaglia is doing it on Friday. He is going to put a mediport in which is a central line also, like the broviac but it is under the skin as opposed to outside of the body. We are very excited. Of course he has no idea that that is going to happen but I'm sure he will be pleasantly surprised! He will finally be able to take normal showers!!!
We will probably return to our NJ apartment tommorrow after the second radiation treatment. We are getting very bored of being in this Ronald McDonald house. We are very fortunate to have a bigger apartment to go home to. We'll go home until Friday when we have to return for his Broviac and mediport but at least we will be more comfortable and Joey will have more stuff to eat in our refrigerator. It's kind of dificult to have things here that he eats. There is no kitchen in the rooms, they share a common kitchen and it's kind of strange to have things in the refrigerator there. Anyway, we are happpy things are going well and we can't wait to go home soon. It looks like the first week in October right now.
Joey has to start oral chemo tommorrow. 3 times a day for 21 days. We'll see how that goes. I hope it doesn't affect him too much. I know it is much milder than anything he's had but, it's still chemo. He has to do that for 4 cycles. 4 cycles of 21 days. Then 6 cycles of accutane (that skin medicine) it seems to work on cancer. It's sort of like a maintenance thing. Some of the parents say that it peels the lips and or the skin and irritates it. Again, we've, he's been through so much that that doesn't even seem to be a big deal!!!! So, hopefully we will be heading home the first week of October, probably on a plane, for those of you who wonder if we will be getting on a plane after everything thats happened. We've decided that GOD is with us and if He calls us, which we hope He doesn't then, it's time to go. God is with us and we will fly home because it's the quickest way for Joey. He probably would not withstand the length of time he has to be in a carseat to drive back home. So....Please continue your prayers and thank you so much for caring about us!!!!
Thursday, September 13, 2001 at 10:24 AM (CDT)
Dear friends,
We are all OK!!!! We are in Manhattan getting treatment for Joey's radiation. We decided to stay at the Ronald McDonald house while he got the radiation treatment because it's very close to the hospital and Joey has to be there at 7:30am and then again at 1:30pm. Thank God we did otherwise he could not get his treatment because the bridges from NJ are closed!!!
It's a horrible thing that has happened to this city and to so many families!!!! We thought we had it bad and were unfortunate with Joey's diagnosis but although it's bad, Joey, Thank God has a chance to live. All those poor innocent people that have died and won't be alble to ever see their families and children again!!!! We need prayers, prayers, prayers for all those people and their families and for our country as well!!!
Anyway, we are safe, we think, we are on the Northern side and all that happened on the Southern part of Manhattan. We are in the 70's and that happened below the 14th. Some of you may have been trying to contact us and we are not at home, so this will explain why.
Joey has been doing great with the radiation. They do it so quickly that he's practically in and out. About 5 to 10 minutes is all it takes for them to do his radiation. Then we have to wait til he gets out of sedation which takes longer than the actual radiation treatment. Then, the hard part is keeping him away from food until after the next treatment at 2:00pm. Poor kid he wants to eat and we kind of ignore him and try to distarct him. Fred and I have been going crazy trying to find things for him to do so that he doesn't think about food. He must be thinking adults are pretty messed up. First we want him to eat every second of the day and now we won't feed him. Oh well, we have tommorrow left then he gets the weekend off and we can eat all day again. But, he's back for radiation on Monday and Tuesday and that's it!!!! Then on Thursday they take his tubies off!!!! Now that's a day for celebration so please, celebrate wherever you are on Joey's behalf. No more tubies hopefully for forever!!!! He's getting a mediport put in but at this time in his life that's like nothing. It's actually an IV line as well but underneath his skin as opposed to outside.
So, so far so good. Joey has not had any nauseau or vomiting or anything!!! Just hungry and a little tired.
Keep praying everything continues as well for Joey and hopefully we will be home soon and happy to be out of here!!!!
Saturday, September 08, 2001 at 12:19 AM (CDT)
Hi friends,
It's very late but I'm so excited about so many things I had to log on and share it with all of you out there also excited and keeping up to date with Joey and what's going on in his life and ours.
First of all, today well Friday yesterday, was the last Immunotherapy for a while. We don't have to do that again for about 6 weeks at least. That may not seem like a long time to you but to us it's really a big break. We still have radiation next week all 5 days, morning and afternoon, 2 sessions a day. The hardest part seems to be keeping him away from food between the treatments of the morning and the afternoon, according to what other parents have told us. The little kids going through this have to get sedated because they can't be moving and they are so little that they won't be still for the amount of time needed so they have to be sedated. The radiation has to be very precise to where they are going to point that thing at. They actually marked his body where they are going to aim the radiation at. They look like pen marks. I think they are like tattoos, they are little marks so it's not a big deal. It's nothing compared to his surgery scar, believe me!!!! Anyway, thats all next week and then 2 more days they following week and then thats it. Then we have to wait 2 more weeks around NY in case his blood counts drop or something.
We are selling our furniture and it's going fast. We figured we don't need it at home and it would be too expensive to move it, so at the moment we still have our beds but tommorrow someone is taking our bed and our futon. Only my Mom will have a bed. But, not to worry because we will be staying at the Ronald Mcdonald house by the hospital starting tommorrow. We decided to do that because it will be easier on Joey to have a place to go to close by between radiation treatments. It would be very uncomfortable for him to be in the car back and forth between the treatments all sedated and he has to be at the hospital at 7 or 7:30 in the morning and that would mean he would have to get up too early too to drive to the hospital. So, a lot of the parents suggested we do that. So for the next about 10 days we'll be at the Ronald McDonald house by the hospital. Thats a hotel like place for families that don't have a place to live or stay while their kids are getting treatment at the hospital. It's a very nice place, they share a common kitchen but you have your own bathroom in the rooms. It'll be something different.
Another thing we are very excited about is that WE HAVE A DATE for the TUBIES to come OFF!!!!!! We are so excited it's really unbelievable what excites us these days. They are going to remove his tubies and place a mediport in. A mediport is like an IV but beneath the skin on his chest above his nipple area. He had one placed at Miami Children's but had to have it removed when we got here because a mediport only has one line and he needed two. His tubies are 2 lines but they are outside his skin and they hang out and they are really a pain. He must be very uncomfortable with those things on his back and we always have to be watching out that we don't accidentally pull them out or something and then there's the whole cleaning them thing....AAAAGGGHHHHH! We are so thankful to GOD that we can actually be at this place in time talking about this possibility!!! It really shows that Joey has shown improvement. Hopefully it will be smoother sailing from here on out. We know that he still has alot of treatment ahead of him and a lot of uncertainty but all we can do is PRAY and believe and PRAY AND PRAY that GOD will leave him on earth with us.
Dr. Cheung saw him today and he was smiling and he said that he believes that Joey has better than, and I am hanging on those words, better than, 50% chance of survival at this time. I say that with happiness although you may be thinking, is that all??? I know it seems like a yucky percentage rate but you know what? It's much better than 10% or 40%!!!!!! We'll take 50%!!!!! We have faith that God is with him and He will do what He needs to do with Joey's life!!!! We want Joey to be with us forever but only GOD knows his destiny, all we can do is love him and do our part to help him beat this thing!!!!We are all doing our part and GOD will do His. So far, so good!!!! What a loving Baby he is!!!! He loves his family to hug and be together and he loves his brother Sheddy, like he calls him. Oh, and everything is "De Daddy" nothing is Mommy's, everyhting is his Daddy's. He's very cute!!!!
Another thing we are very excited about is the fund that we are setting up on behalf of Joey and other kids with Neuroblastoma. We started out opening an account called FAMILIES FIGHTING NEUROBLASTOMA. Our friend Lester and Fred's accountant helped open a corporation in that name. Our friend Peter is helping establish is as a nonprofit organization so that all contributions from others can be tax deductible, that encourages others to contribute. That is still in the process. Shouldn't be too much longer. Our friend Jorge Gomez is helping us with a logo and with printing things we may need. All that is very exciting. It is established to help pay for medical bills of children with Neuroblastoma, including Joey's medical bells, of course and also to donate money to continue reasearch to find a cure for Neuroblastoma. If anybody would like to make a donation the fund is the following;
FAMILIES FIGHTING NEUROBLASTOMA
in care of Lester Barrerras, CPA
11120 N. Kendall Dr. Suite 201
Miami, FL 33176
Also....more exciting things are happeining. There are so many to tell. Recently the Sun Sentinel ran a story about the Pembroke Pines MOMS Club and how they are helping our family, specifically Joey and myself. They are having some fundraisers on Joey's behalf. They are going to have a Garage Sale October 27th, location is yet to be determined, so keep your eyes and ears open for that, I will probably post it closer to the date. If anyone is interested in helping or donating something you can contact Dawn at
(954) 392-1497 and I think it's going to be BIG!!!! The proceeds are going to go to the fund on Joey's behalf. The Moms are also going to hold a FASHION SHOW/AUCTION in February. They are looking for corporate donations for that as well, so anybody interested in helping can contact Kerrie at(954)441-0945.
To think that these Moms son't even know us!!!! Is that unbelievable??? We can't thank them enough!!! People that don't even know us are sending us donations for Joey!!!!!We had several people send donations because of the articles in the SunSentinel and the Miami Herald. People we don't even know that care!!!!
And,,, if that isn't exciting enough...Fred's friends are trying to put together a Golf tournament. They are still working out the details so keep your eyes open for that too. I think his friends are going to start contacting people within the next couple of days to see who is interested in participating and for sponsoring holes and other things.... I'm not quite sure how that works but if you are interested in that you can contact his friend John at (305)823-3326. That's suppose to be sometime in October I think so they are really going to be acting soon.
And if that isn't enough....my cousin Adidary got so excited about the Pembroke Pines Moms Club and what they were doing that she wanted to do something too and she called my other cousin Rosi who is a teacher at the High School Fred and I attended; PACE and they are trying to have a fundraiser through the school as well. I think they are even going to contact Fred's elementary school and see what they can do there!!!! Everybody is getting excited and that makes us excited and gives us hope and something else to think about!!!!
Thanks to everybody that is helping out in anyway they can!!!!! We appreciate all your help and hope that we will be home soon to thank you personally and share our lives with Joey!!!! He is a lucky little boy in many ways!!!
Well, I can't leave without saying something about Freddy too!!!! He is very excited about going home to MIAMI. That's easier to say than Pembroke Pines. He is so excited that he even started putting toys away in boxes today and he said, it's alright, I'll see them in Miami again, right? He said, " I thought we were never going back to Miami." Poor baby. He really has been through alot in his own way, without Mommy and Daddy most of the time, without anybody to play with, except Grandma. But all in all, things could have been much worse and we have to be greatful that he's strong and healthy and smart and handsome!!!!! Soon all this will be behind us and life although never the same will be better than it has been these past couple of months.
AGAIN, thanks for everything and pass the word on about the functions, we need your help!!!!
Very happy, Linny
Thursday, August 30, 2001 at 11:18 PM (CDT)
Hi everybody. Sorry we haven't written in a few days. It's been hectic. Daddy was away in Miami and Mommy had to take Joey to the clinic by herself in a stroller, give hime the Immunotherapy and go back in the stroller. By the time we got home and Joey's medicines wore off it was time to sleep. The Immunotherapy has gone very well thank GOD. He hasn't had much pain with the medications he gets. They are alot but it does the trick. He gets really drugged out. He talks like he's drunk and he gets very irritable. He is throwing major tantrums during it. Sometimes I have to put him down on the bed because he pulls away and I'm scared he's going to pull the tubies out or hurt himself. He just doesn't know what's going on. He eats and doesn't realize his mouth is full and asks for more but I can't give him more because he'll choke and he gets mad because I don't give him more. Its quite stressful. But, as long as it's not pain, its bearable.
He did fine with the Radiation simulation. He was sedated and they kind of marked his tummy area where they will be giving him the radiation. He has like marker drawings on his tummy and on his waist area. They are going to target the liver and some lymph nodes in the immediate area. That's basically where the tumor was. They try to hit the primary site. Thank GOd he didn't have it in other areas otherwise or they would have to hit other areas as well. They said that he may some nausea but other than that he shouldn't feel any pain. I hope so. The worst part is that he can't eat until the second radiation is over. He'll be doing one in the morning and then in the afternoon. Two sessions a day for 7 days. He gets sedated for both so he cannot eat until after probably like 2 o'clock. Poor thing, now that he could eat they are going to make him wait to eat. OH well, what can you do. Tommorrow is the last day this week for Immunotherapy and then we skip Saturday and Sunday and he's getting a break on Monday too because it's labor day and then we go back for another week of Immunotherapy on Tuesday through Friday. Following that, 2 weeks or 7 days of the radiation, then we have to wait 2 weeks after that because his counts may go down with the radiation and then WE CAN GO HOME!!!!
He might get his tubies taken out before we go home. From the simulation, which is something like a CAT Scan they saw that his tubies, one of them is kinked or twisted inside his body so they might remove it and we might put in a port which is under the skin. That way he can get wet and nothing is outside of the skin. It's probably better now that we are going home to Miami, not many kids in Miami have Broviacs, they have ports. Its under the skin on his chest just above his nipple. He had one put in in Miami but had it removed when we got here because he needed two lines instead of one, which is what a port has. A port is for mild treatment rather than for heavy duty stuff like he got here.
We are very hopeful and happy that our baby is with us alive and doing as well as anyone could ask for. We want to thank you for all your prayers and please continue to pray for Joey. We are not out of the woods yet, but thank GOD we can see some light. Thank You GOD for everything you have given us!!!
Joey had two great articles in the paper this weekend written about him. One in the Miami Herald and one in the Sun-Sentinel. We want to thank the Pembroke Pines MOMS Club that has been working so very hard to help us!!! They contacted the papers and made Joey's story known and are trying to find ways to help us financially as well as emotionally to get through this. If you missed the articles and would like to see them, write me and I will email them to you. What a great bunch of MOMS and to think that they don't even know us or Joey!!!! They are planning a garage sale for Joey's benefit in October, I believe the 27th, the location is not determined yet and also a fundraiser fasion show auction in February. I will post the information as soon as everything is closer to the date. We appreciate any help that anyone can give.
Well, I'll let you know if anything else develops, so far everything is going GREAT!!!! Don't forget to sign the guestbook.
Saturday, August 25, 2001 at 09:04 PM (CDT)
Hi friends! Joey is doing GREAT! He is eating pretty well. He eats Oatmeal cookies and cheese and pasta with tomato sauce, Voila garlic pasta, popcorn (I know it's a choking hazard) but he wants it and I give it to him very carefully! He's also eating pan con mantequilla, that's bread with butter for those of you who don't speak spanish. He only drinks water. We are scheduled to back to clinic on Monday.
I would just like to say THANKS! to all the people that have been there for us; Fred, Freddy, Joey and myself! It is truly a blessing to have people that care and take time to let us know. Whether its a call, a letter or whatever, an email, it really keeps our spirits up and lets us know that people are pulling for us and praying and reminding GOD to heal Joey!
I want to say a special thank you to those of you our family has not even met or known and have taken a special interest in our little angel and our family. The world is not all bad. Actually there is alot of good, and many people that care.
I read a quote that I wanted to share with all of you and it really expressed what we feel. "The definition of a friend is someone who's coming in the door when everybody else is going out." Thank you for being there and not forgetting about us within your hectic lives. We really appreciate it!
If you read this entry before Sunday, I believe the Miami Herald and the
Sun-Sentinel were going to do a story on Joey and a bunch of incredible MOMS from the Pembroke Pines MOMS Club that have really been there for me throughout this whole ordeal. If you get a chance get the paper. It should be in the local section of Pembroke Pines. Thanks!
Monday, August 20, 2001 at 11:04 PM (CDT)
Hi everybody! Today was a great day! We went to clinic and Joey was tested for HAMA. What that is, is to see if his own body is producing the antibodies that they give him in the Immunotherapy. Some children start to produce their own antibodies after a few Immunotherapy rounds. It's kind of too soon for that, it usually takes a little longer, if at all. Some kids never produce it on their own. The great thing is, if he does produce it at any point we don't have to come to NY to get the antibodies. We could stay home until he no longer produces them. That would be very nice.
Anyway, the doctors officially took him off TPN, the IV nutrition. He's eating a lot of cheese, oatmeal cookies and Baco's. Whatever. We are very excited he does not have to get hooked up any more!!!! We have been doing this since his surgery in February. It really is something we will not miss!! I'm a little scared. Fred isn't but I am because now he has to eat and drink all his calories on his own. But, he has to do it eventually and the faster the better. The TPN can damage the liver after a while.
We celebrated today and he ran around until 9 pm. His usual bedtime is between 7:30 and 8:00. But today we let him run around and he knew something was going on. He was running and singing. When he got hooked up before, once he was hooked up we didn't put him on the floor anymore because the line would back up and his blood would come out through the line. It's complicated. The first half hour the IV TPN tapers. It does something slowly and if he was walking or running around the pressure made the liquid that goes in come out and his blood would push out into the tube. You probably have no idea what I'm trying to explain. Just know that he couldn't walk around after 8:00pm before and now he can. We may let him run around tommorrow til he falls asleep and let him feel what that's like. HAHA! I felt bad I made him go to sleep at 9:00pm. He was so happy running with his brother chasing dragons and dinosaurs, eating ice and cookies! That's the most fun we've had in a while.
In addition to that we need to stay two weeks after radiation to make sure he's OK. His blood counts might come down somewhat from the radiation and they don't want him to go so soon. That's OK with me. Whatever is going to make him safe is what we do.
The doctor says he sees him very well. "Look at him," he says, "He's doing great!" That's nice to hear.!! We even talked about possibly taking his tubies off his back after radiation. He really doesn't need them because he can get finger sticks back home to check his counts and if he ever needs anything else they can start an IV just like they would have to for any other kid. Hopefully that won't happen. And, he only needs Immunotherapy once a month for a week. He may need a port like he had before which is beneath the skin on his chest. They haven't said what we are going to do yet. They'll probably talk about it and tell us what they think is best later. The thing about taking the tubies off is that besides being uncomfortable for him because he lays on them and they have clasps, 2 of them. He can also get a line infection and then they'd have to pull it anyway and we don't want anybody pulling anything except LaQuaglia (his Surgeon here). And we have to change the tubies every other day and he really doesn't like that and he can't go in the water and when I bathe him I have to tape them to his back so they don't hang down inside the tub. It's really a pain in the butt.
So, we are getting excited.!!!! Freddy is looking forward to going home too. He doesn't remember the house too much. Just some things. He doesn't want us to change anything and he doesn't want us to sell anything here. He wants everything the way it is.
We are starting to experience a little bit more of a normal life without so much clinic hospital everyday. We don't have to go back until next week Monday. We'll start Immunotherapy again for 2 weeks, we'll skip Labor day because the clinic is closed and he probably won't have to make it up. We are also doing the simulation (fake practice) of the radiation on Monday. Fred is leaving to Miami on Sunday night so we'll be staying by the hospital in the hotel again so I can walk to the clinic. He'll be back Wednesday and his parents are coming with him. That'll be nice. We get very excited to see people.
My Mom is returning Saturday so that she can take care of Freddy while I go to clinic and Fred won't be here. Also, Charlie, Fred's brother just came for a conference and we were able to see him for a little while. The kids got a kick out of seeing him. Dad's brother, that's kind of cool.
Anyway, we'll keep you updated on the latest! Don't forget to sign the guestbook!
Wednesday, August 08, 2001 at 03:44 PM (CDT)
Well friends, today was a good day. We went to clinic and got a blood test, TPN test, saw the nurses from the Neuroblastoma team and left! Not many quick days like that. Joey no longer has the ROTOvirus!!! Yahooo! Poor kid has had his fight with it. Hopefully we will never see that again.
We are looking to start Radiation on the 27th. A bit of a delay. I guess someone forgot to schedule us and now we have to wait for Anesthesia to coordinate with Radiation. He needs to get sedated for it because he cannot move during the Radiation treatment. So... we think Radiation simulation on the 27th of this month and also the next round of Immunotherapy that same day. Let's see how that works out. I guess if they think it's OK it should be. Seems like alot for him but they know best. It just puts us back a little to get back home. But, we have learned to roll with the punches. Things are not the way we want them but the way GOD wants them and this must be the way He wants them. He'll go home with more hair, ha ha. Try to put a positive spin on it. In the meantime we are enjoying each other and driving each other a little crazy in the apartment because Joey can't go anywhere, pretty much. He hates the car seat so that limits us to staying at home pretty much.
Freddy, the baby had his check up and everything is fine. He is in the 90th percentile for height and weight. Healthy, thank GOD. He had 3 shots, Immunization which he did not enjoy. I had convinced him the needle was tiny but they turned out to be a little bigger than I explained and he was not happy. He told me I lied to him and that he hated the nurse. He actually told her he hated her because she hurt him. He's not shy at all to speak his mind. I kind of like that but sometimes it's scary how they just blurt out what they feel. He's OK though, he got a MARS Lego toy for the trouble.
So, we are free until next week sometime, Monday or Tuesday. Thanks for checking in on us. I will keep you posted on anything new. Don't forget to sign the guestbook, it's the highlight of our day.
Saturday, August 04, 2001 at 08:45 PM (CDT)
Well friends, we are really getting excited now!!! We have been officially told from Dr. Cheung (Joey's Oncologist) himself that after the radiation treatments and the next Immunotherapy treatments we can go home and of course commute back for the rest of the treatment. But, we can go home!!! HOME HOME Pembroke Pines home. We are soooo excited. This is finally getting better. Joey is doing really well. All his tests have been clear. They will do testing every 3 months to make sure nothing comes back. In the meantime he is still recuperating from the transplant. He still has the Rotovirus, which is basically diarrhea and nausea every now and then. He also just eats junk. He likes chips and nibbles pizza and chocolate. He still has the IV nutrtion TPN because they decided he should stay on it until after radiation. He's very thin and his muscle tone is really soft. The radiation is not suppose to be such a big deal. It sounds scarier than it actually is from what the other parents tell us. We were hoping to start right away but it seems that we are going to get about 2 weeks rest before he starts. The Radiation Oncologist is taking a vacation next week and then the Anesthesiologists that we need for the sedation doesn't have an opening until about the 20th of August. We welcome rest because we haven't had a moment of rest since Joey got diagnosed in October. We've been on fast forward pretty much all the time. Yet, we are now getting anxious to go home. But, it is according to GOD'S plan and not ours. So, we will welcome the rest and enjoy each other for the next couple of days. Joey doesn't have to be back in clinic until Wednesday. That is really unheard of. I can't remember a week that we didn't have to go on Monday morning to clinic. Anyway, it's kind of scary staying away. It seems like we should be doing something.
We are scheduled to start Radiation on the 13th. The way they will be doing that is that the first day or 2 or 3 is a simulation. They have to mark his skin, with a tatoo? It's suppose to be really tiny, I guess where they are going to aim the radiation at. He has to be sedated through it because he will move and he cannot move. It has to be very precise. Then after they do that he will start and he needs about 7 days and there will be 2 sessions, morning and afternnon. The problem is that he has to be sedated for both procedures so we have to wait til he comes out of one sedation and then he does the next session. We are trying to see if we can stay at the Ronald McDonald house for these days because it would be more convenient to go there between sessions than to have to either wait in the hospital or to drive back and forth. Traffic here is horrendous!!!! He gets really mad in the carseat when he's groggy from the sedation and the radiation may make hime nauseus too. So, hopefully we'll be able to stay at the Ronald McDonald house. I've never been but Fred stayed once with Freddy and my Mom during one of the chemo's. They didn't like it too much but it has to be better than driving or waiting around. It's like a hotel room and you have your own bathroom but it doesn't have a kitchen. There's like a common kitchen. I'm sure it'll be fine.
So, I'm glad you've been visiting and keeping up to date with Joey. Freddy is looking forward to going home too. He remembers stuff from back home. He's counting down the weeks. He's scheduled to go see the Dr. for some Immunization shots he needs (we cleared them with the Oncologist already). He has to complete them to start school Pre-K 4 in September. School will start in August but he'll miss the beginning. Oh well. He says he's not going to the Doctor or the school. I think he'll come around, I hope.
We'll keep you posted with any new developments.
Oh, by the way, if anybody knows of a Social worker that we can contact that may deal with special needs children or catastrophic illness benefits for medical bills or someone like that send me an email. We are trying to find help on how we can get benefits for paying Joey's medical bills that our insurance did not cover. Our insurance covers about 70% of the bill but the rest we have to come up with. The Social Worker here has been trying to help us but she is only familiar with NJ and NY not Florida. So....We'd appreciate it. Thanks. Don't forget to sign the guestbook.
Tuesday, July 31, 2001 at 09:24 PM (CDT)
Hello everybody. Sorry I haven't written in a few days. We have been a little sleepy and exhausted at night. I attempt to get up to write but once I get in bed I can't get back up. The last couple of days we have been doing Immunotherapy. They are long days. We are up around 6am, we unhook Joey's TPN (nutrition) before 7 and try to be on our way to get to clinic early. Once we are there we get weighed, temperature and put a name band on. Then they draw blood to check that he doesn't need something like blood or platelets and then they take a little while before they hook us up. Well, they only really hook Joey up. That means he's attached to an IV pole with two long lines getting medicine. We have our own little room that they always give us. They put us all the way in the back. It's kind of nice because it's a little more private. In the beginning we called it the cave cuz it's kind of smaller than the other rooms but now it's kind of cozy and lately we don't have to share it with anyone because they don't want him to be around other kids because of the transplant. He's still not suppose to be around other people. He also has the Rotovirus but that never really stopped them from putting someone else in the room with us.
Anyway, first he gets GMCSF which they infuse for about 2 hours, they then flush his line for about another 30 minutes and then he starts the 3F8's (Immunotherapy). The first part he gets no pain. He actually takes a little 20 minute nap somewhere in there and then he doesn't get much pain with the Immunotherapy either until about the end of the hour and a half. Throughout the infusion of the 3F8's he's getting pain medication. He watches TV or colors or eats chips. He gets really groggy and silly, like kind of drunk and he plays around and throws kisses and does silly things with Daddy. You all know Daddy and his funny tricks. Joey's a little joker too. He puts stickers and stuff on his face. Then towards the end he starts to fall into like a staring trance and he might close his eyes, in and out of grogginess. That's on a good day. On a bad day he'll start to thrash around and arch his back because he's in pain and he wants us to stand and sit and stand and sit and he doesn't really know what he wants. He gets really irritated. The medication gets him mad because he wants to get up and he can't. Sometimes he'll sleep but whoever is carrying him cannot move a muscle because he'll get really mad. It's different every day.
We do have some good news! The MRI was normal, nothing to worry about like I did. The Echo was normal too. So far everything looks good. He's weighing a little more but it could be all the fluids he gets in the clinic 10.7 kilos. We'll know over the weekend when he pee's it all out.
Tommorrow Immunotherapy again. We had a nice visit the last couple of days. Alex and Lourdes Fernandez came to visit Joey and us. They were very nice and they came by the hospital today and Alex signed stuff of the Marlins for the kids. I wasn't able to see him go to the rooms cuz I was with Joey but Fred was with him and he says the kids went crazy and they were very happy.!!!! It was nice to have a change in the clinic. They stayed and visited for a little while.
We want to Thank all our friends. Some have been able to come and visit and others have shown their support by calling and keeping in touch with us. It really has meant alot to us. It's hard to know what to say to us I imagine but just knowing that you care to call and let us know that you are thinking about us means more than words or anything you may say.
We know that you don't know what we are going through but we know that you care and wish Joey to get better. It really has been very difficult and we can't wait to get back home with our family. For those of you that are reading this know that your family, your health and your friends are what's important in life. Everything else can really come and go and life would go on but without GOD, your health, your family and their health you really couldn't think about anyhting beyond that. Look at us. Nothing is more important than seeing Joey well and being together. It doesn't matter that we're here or home, if we have more or we have less. All we want is for Joey to be well and to enjoy our lives together with him and with people that care about us. Those people, our friends and family that have called, sent cards, prayed, those people are helping us get through this. Thank you! We love you and keep praying for Joey because GOD IS LISTENING!!!!!!
Wednesday, July 25, 2001 at 05:12 PM (CDT)
Hi everybody,
Just got back to our New Jersey home. We stayed 3 nights at a hotel near the hospital. My Mom, Little Freddy, Joey, and myself. My Mom took care of Freddy while I took Joey in a stroller covered with out plastic bubble thing (it's really a rain cover). It wasn't too bad. It was only 2 blocks. Joey actually enjoyed the stroll. Poor baby hardly gets out of the apartment or the hospital. Every morning I'd tell him, come on let's get ready and go "pasiar" which is "go for a little ride". He's get very happy and sit in his little stroller. We've had early starts, before 8am. Most days we go from 8am to about 4 or 5 or 6pm. We're doing Immunotherapy. They hook him up to an IV and infuse medicine. This time around they give him something prior to the Immunotherapy called GM-GCSF which stimulates something in the bone marrow to fight Neuroblastoma cells. That infuses for about 2 to 3 hours. After that he gets the Immunotherapy (3F8, it's called). That gets infused over an hour and a half. Throughout that time he gets pain medication to not feel the pain. He's been doing pretty well with the pain control. Today it was a little tougher because they missed a medication when it was suppose to be given and it's so specific that then if you try to change the course of the things you give him it doesn't work as well. But overall he was OK. Tommorrow and Friday is more Immunotherapy. Tommorrow also we have to make up the ECHO we couldn't get done last week because he cried too much. They are going to attempt to do it while he's a little sedated with the Immunotherapy medicine. We'll see how that works.
Anyway, concerning the MIBG that scared us and we were a little upset because we saw something like a shadow and we didn't know what it was. The Dr., the Oncologist called that night to say not to worry that the preliminary CT scan looked OK and that we shouldn't worry. So we didn't. Yesterday the Oncologist saw Joey and he told me, because Fred was in Miami working the office, he said that the MIBG was normal. He says he doesn't know what I saw but to not look at the scan because I don't know how to read them and it just got me upset for nothing. OK, I agree. He did say though that they saw 2 little shadows on his lung or lungs, I'm not sure, but he said that he wasn't worried because it didn't come out on the MIBG and that it was too soon after transplant and it would be almost unheard of that it could be Neurobalstoma. So, he said they would just watch it. That it very well could have been there from the beginning and it wasn't noticed and it could be scar tissue or it may be from a previous infection. So, in other words, they'll watch it, they don't think it's anything to worry about. So we won't worry. We'll keep on praying that everything continues to go well as it has with GOD's help!!!!
Thanks for continuing to pray for our family and for remebering us.
Don't forget to sign the guestbook.
Saturday, July 21, 2001 at 07:21 AM (CDT)
Hello again friends. Yesterday I meant to write but it got a little crazy. We went to clinic and had the MIBG done. That's the test where they injected him yesterday and it's suppose to highlight the Neuroblastoma cells today in the MIBG scan.
We got to clinic a little late and hooked Joey up quickly. We took him down to the room where they perform the scan. I took a book to read while I sit next to him because he's in this machine that is sort of like an MRI machine but more open, not so enclosed and I thought for sure it would be OK. So as the machine was passing over him I attempted to read and browsed up at the screen to see how things looked. There's also a nurse right there next to him monitoring his breathing and his heart rate because he's sedated. They had to sedate him twice because he wouldn't fall asleep. He looked like a little drunk, pointing and saying MAAAMMAAA. Really cute. So as they scanned his little body and I looked at the monitor I see the technician zero in on some dark shadow looking thing that I hadn't seen before. I'm looking at the screen and saying, what is that? Of course the technicians don't tell you anything. I was thinking. That's nothing. What could that be? He should be clear, transparent....he just got out of transplant and the chemo they gave him had to kill everything. That can't be anything, but what the hell is it? I hadn't seen it before. The first time they did the MIBG he had a ball in the middle of his tummy the size of a grapefruit. That was the tumor. Later after all the chemo that ball wasn't there. Now this thing was there. It looked like it was on the upper periphery of where the tumor had been, the size of an egg. What is it then? Sometimes the MIBG shows things like scar tissue. I know that right after the surgery when they removed the tumor they saw something and they said it was scar tissue. It was nothing. Now I see this thing. I really don't know how to read those screens. I'm not a doctor. I'm scared though because I know I see something. I called upstairs for Fred to come see the screen. He had been upstairs with Freddy watching TV. They came down and Fred saw the screen. At this point the technician was a little upset because we were all looking at the screen. Fred saw it too. At this point the nurse checked Joey's bodyto see if there was something that the scan could be picking up. She noticed he still had the bandages on his hips and back, 5 in total from yesterdays bone marrow aspiration. She said sometimes if there's blood on the bandages it may be radioactive and the screen picks it up. So she wanted to take the bandages off. She did with some thing that helps the bandages come off (wisk). He woke up of course and they had to give him Ativan which sedates as well but they couldn't give him more of the other one. Thet retook the scan At this point I didn't want to look any more.
The doctors don't tell you anything right away. They have to look at all the tests together to give a report. So....we had a heavy heart. We know it can't be anything. We believe it is nothing, we are being positive and believing that GOD has healed him and continues to heal him every day but we don't know what we saw and we are scared.
We drove home scared and Fred almost canceled his trip home. He wanted to be here for the results on Monday, we hope. He had told the nurse to call him if they heard anything preliminary. Fred was going to cancel his flight at 7pm if he hadn't heard from the doctors.
Dr. Kushner called. Boy were we happy!!!!He said, "I heard you were upset about something, what were you upset about?" Then he spoke to Fred. He said not to worry that he didn't expect anything. The chemo was really harsh, he has been clear since about the 3rd chemo and the preliminary CT scan didn't show anything. Usually they would know pretty much right away if there was a problem. He's one of the stricter Oncologists and so we feel more peace. We just don't know how to read those scans and we got upset. I don't think I'll be looking at those things again. They are misleading and I don't know anything about them. Dr. Kushner said that sometimes the MIBG picks up other things that aren't Neuroblastoma. So we are going to believe that it was not Neuroblastoma. It must be something else we don't know and we'll know soon enough.
We are breathing a little better now but of course we want to hear the total results. Monday it's back to clinic for 3F8 Immunotherapy. Hopefully here won't be any more scaries. My heart is growing weak.
Thanks for your prayers and make a little note to GOD to make those tests clear!!!!Thanks.
Thursday, July 19, 2001 at 05:10 PM (CDT)
Hello everybody. We are so excited that more and more friends are finding the website and signing the guestbook. It makes us happy to know that so many people care.
Today and yesterday we have been taking Joey to the clinic for testing. Yesterday, Wednesday we were at the clinic early because Joey couldn't eat or drink after 10am for a bone scan. They don't let him eat or drink because he gets sedated because he's so little and won't sit still and they don't want him to aspirate anything he may have had prior to the sedation. So, it turns out to be pretty tough to keep him out of the kitchen to eat chips. So.. we got to the clinic early and they gave him and injection in his tubies at 11:30, then we had to wait to do the scan at 2:00 so that the medicine injected reaches the bone. Meantime, at 12:30 we tried to do an ECHOcardiogram. They tried, but it was unsuccessful. He didn't like for them to stick those sticky things on his chest and the little cream really sent him over the edge. They brought puppets and stickers and all he would do was cry and try to rip the stickers off. So....we'll have to try that again, maybe, probably sedated. Then later at 2:00 they sedated him and he had the bone scan done. They don't tell you the results right away. We have to wait till the doctors read them. They usually do it after all the tests are in. But, from what I could see the bone looked clear. He really never had anything in the bone. He had minimal involvement of the bone marrow. That turned out to be a late day at the clinic. Freddy was with us and that didn't make it any easier but we miss him and tried to take him. Not a good idea. He gets bored and wants to play and Joey really isn't suppose to be around people so it's kind of hard.
Today Thursday again we got there early and he had a bone marrow aspiration done and a spinal tap. That's to make sure the bone marrow is clear. He was sedated for that too. From the bone aspiration they take advantage that he's already sedated and they took him directly to a CT scan. When he woke up we gave him an injection called MIBG (It's like some nuclear medicine) it's suppose to single out Neuroblastoma cells or something like that. Tommorrow he'll have the MIBG Scan which is suppose to light up any Neuroblastoma cells. He shouldn't have any at this point. Some kids they say light up like a Christmas tree. Joey didn't thank God. His tumor was a big ball in the middle of his belly. But it won't be there tommorrow.He's going to be clear with GOD'S HELP!!!!
Then we should be done for the week, unless we have to do the Echo again tomorrow. We'll see. Well. We'll keep you posted.
Little Freddy is expected to start school in St. Marks in Aug/Sept. if we're there. We're excited about that. He on the other hand said,"I don't want to hear that word!" I'm guessing he means school. I'm sure he'll like it. He loved it for the short while he went to Cambridge (the preschool by our house) before Joey got diagnosed. He went from Aug to October. We had to pull him out right before Halloween. That just reminds me that that Halloween they were going to be Batman and Robin and Joey wasn't able to dress up. We were at the hospital during that time. I can't wait to do all that fun stuff with them again! We sure hope that's in God's plans!
He's sitting eating chips right now. Oh, we were still Rotovirus positive. Let's pray to get rid of this pesty virus. We need to eat!
Don't forget to sign the guestbook. We get excited to see the entries. Keep praying!!!
Monday, July 16, 2001 at 03:11 PM (CDT)
Hi friends. Today the whole family went to clinic. Joey is doing very well. Thank God. He dropped weight 9.8 kilos. There's 2.2 kilos in a lb. so about 20 lbs. He turned 21 months yesterday so that's kind of thin. He came in a that weight and we've been here for about 8 months. It's really hard to see him so thin. He barely eats. We think alot of it probably has to do with the ROTOVIRUS that he still has but he only eats, actually nibbles, potato chips, chocolate and that's really it. He takes a few sips of water and nothing else for the whole day. Thank God he has the TPN(the IV nutrtion). They decided to increase his calories again until he gets rid of the rotovirus. He's also going to get radiation in about 3 weeks and that's going to make him a little sick too, so he's going to need it for a little while longer. They want him to start eating by himself but right now it's not happening.
He's also kind of limping on his left leg. They aren't going to do anything yet because he's going to get all the testing done Wednesday, Thursday and Friday so that should tell us if there's a problem there. The doctors had seen a shadow on the left femur of the leg prior to transplant but they took an X-ray and said it looked clear. We're wondering if that has anything to do with it. I hope it's nothing. He walks almost as if the left leg were a little shorter than the right. It wasn't very noticable before transplant and then he barely walked during transplant, the 38 days we were in the hospital. He only started walking towards the end and he was very unstable and weak. Well, we'll see. We are going to keep an eye on it and we'll see the results of the tests. Wednesday, Thursday and Friday will be testing to make sure everything is clear.
Monday we start Immunotherapy for 2 weeks, then 2 weeks radition, and 2 more weeks Immunotherapy. Dads going home Monday to work the office Monday and Tuesday so Mommy will be at the hospital for Immunotherapy by myself. I'm not looking forward to that. He's getting a new medication through the IV and I'm a little scared if he gets a reaction or something. We had the pain control pretty much under control prior to transplant so I'm not too worried about that but it's nice to have Dad there. He knows more about blood pressure and medical stuff than me. I'm sure it'll be OK. The nurses will be there to help. They're very nice. I have no idea how I will go to the bathroom though. Oh well. Who needs to go to the bathroom anyway?
We finally put the pictures up so take a look. We took those pictures right before transplant at Sears. I wanted to have nice picture of Joey with his little bit of hair and also Freddy had just turned 4 years old in May, so I hope you enjoy them.
Thanks for coming by and thanks for remembering our family in your prayers!!!
Thursday, July 12, 2001 at 09:28 PM (CDT)
Hello everybody. Today was good and uneventful. We went to the clinic. Fred, Freddy, Joey and I. The whole family. We didn't think we were going to have to do much so we were able to take Freddy. And, thankfully we were right. Joey weighed 10.1 kilos, .3 less than Monday. It could be that they went down on his TPN (IV food) to see if he starts to eat more and gets hungrier. He is eating a tiny bit more, chips... that is. Nothing else. He doesnt want anything else. Oh, wait, he did try a little bit of Pizza today, a few small bites. His counts were good and he didn't need blood or platelets. He did need to get an antibiotic IV because he needs to get it once a month to prevent a type of pneumonia. They drew blood to check the levels for his TPN. They adjust it sometimes if he needs more potasium or something. He's getting about 500 calories from the TPN nightly. We hook him up to an IV bag (it kind of looks like a long skinny backpack) at around 7 or 8 at night and it infuses through the night. It sounds kind of strange but we've gotten used to it. It sits right next to him in bed upright against the side bar rail of the bed and you can sort of hear it pumping through the night. It's attached to his Broviac which is a tubie that comes out of his back. It's hard to explain. Anyway, we were at the clinic not too long while he got the antibiotic, we were watching cartoons on the TV and he was walking around a little bit. He can only go so far with his tubies attached to the IV pole. He's so tiny attached to this tall pole thing. Anyway, he's use to that too. He didn't like the stroller bubble thing again but today he barely wanted to wear the mask. He didn't get the finger stick because his nice nurse Erin did it quickly as soon as we got to the clinic so he wouldn't have to get stuck. He really hates that and he cries just as soon as he sees the room where they do it in. He say's "YA....YA...." That means, that's it, no more.
We don't have to return until Monday again for counts again. We still have the Rotovirus and throwing up a little. He gets medicine orally throughout the day, which he hates and is getting smart about it. He's spitting it back out at us. Oh well. What can we do? He's taking an IBG medicine (Immunoglobulin) to boost his immune system 3 times a day and Opium to constipate the diarrhea (just a little) 4 times a day, this helped him get rid of the rotovirus last time, and he has to take another antibiotic orally twice a day. He's really getting sick of all these oral medications. We also give him half a pill of Zofran that disolves in his mouth for nauesea. How do spell that anyway?
I took a bunch of cute pictures of him today playing with Blue. Hope I figure out the picture thing to share them with you soon.
Thanks for visiting and don't forget to pray for Joey's healing!!!!
Tuesday, July 10, 2001 at 09:48 PM (CDT)
Hello everyone. Today is 35 days post transplant. Joey is doing pretty well. He gets tired quickly and wants to be held many times throughout the day, but that isn't a problem. He still throws up and has diarrhea from the rotovirus, so that's not so nice. But, he is trying to eat. He eats potato chips. He likes the twirly pasta, spicy chips and mariquitas. He takes about 5 sips of water the whole day and that's it. Thank God for the TPN (the IV food). That's the only reason he's stayed at his weight. Right now he weighs about 10.3 kilograms which is about 22-23 lbs. It's not alot for a 20 month old, especially a Cuban one but we'll take it. We are definitely going to have to work on that back in Miami.
We visited the clinic on Monday and his blood counts were good. He didn't need blood or platelets so we were out of there fairly quick compared to what we usually have to be there. We had to get him a rain cover for the stroller because he can't have people breathing on him or getting him sick and he's too little to wear a mask. We attempted it but he pulls it off. Mommy tried to wear one with him but he didn't care. He looked like the boy in the bubble in the stroller. Freddy went with us. We try to take him when we think we won't be too long so he doesn't feel left out. He thought the stroller thing was kind of funny but then he wanted his little brother to get out and walk around. We let him, he decided to wear a mask for a little while.
We don't need to go back to clinic until Thursday to check his blood counts again. Then, if everything looks good next week we go on Monday for counts again and Wednesday, Thursday, Friday will be testing. CT scan, bone marrow aspiration (biopsy), bone scan, Echocardiogram, MIBG (nuclear medicine scan). They have to do it on different days because they have to sedate him for these things because he's so little. I still haven't gotten use to seeing him go in to these testing rooms sedated without getting sad. I pray that everything goes well but he's so innocent not knowing what's going on. He's a strong boy though and he always does well with GOD's help.
I hope you tell others about Joey so that they can pray for him. The more prayers the better to save our baby. GOD hears us and he knows that alot of people want to see Joey better and living. Please tell everybody to pray. Thanks for visiting!
Sunday, July 08, 2001 at 08:59 PM (CDT)
Hi friends. Joey is doing pretty good today. We are home already post transplant. I will tell you a little more after I outline his treatment.
The past two entries I tried to summarize how we arrived at Sloan Kettering and where we are right now in Joey's treatment. Today I will outline what he has already been through as part of his treatment and what he has left so that you can refer to it when you want to know what comes next in his treatment.
Joey's Treatment Plan N8 Protocol
Miami Oct. 23-Nov 17, 2000 Chemo cycle
NY Nov. 17-22, Testing
Day 1 Nov. 27-30, Chemo cycle 1
Day Dec. 6-12, Neutropenic
Day Dec. 18-22, Chemo cycle 2
Day Dec. 27-Jan. 3, 2001 Neutropenic
Day Jan. 11-16, Chemo cycle 3
Day Jan. 17-27, Neutropenic
Day Feb. 9, Surgery 8 hrs
Day Feb. 9-17, Recovery
Day Feb. 19-23, Immunotherapy
Day Feb. 26-Mar.1, Chemo 4
Day Mar. 4-20, Neutropenic
Day Mar. 26-30 Immunotherapy
Day Apr. 3-5 Testing
Day Apr. 9-13 Immunotherapy
Day Apr. 16-20 Immunotherapy
Day May 16-18 Testing
Day May 29-July 6 ABMT Transplant
TENTATIVE
Day July 18-20 Testing
Day July 23-27 Immunotherapy
Day July 30-Aug 3 Immunotherapy
Day Aug 6-10 Radiation
Day Aug 13-17 Immunotherapy
Day Aug 20- 24 Immunotherapy
MAYBE WE CAN GO HOME SOMETIME AROUND HERE AND COMMUTE FOR THE IMMUNOTHERAPY THAT HAS TO BE DONE IN NEW YORK ONLY
Day Aug 27-Sept. 14 Oral chemo
Day Sept. 24-28 Immunotherapy
Day Oct. 1-19 Oral chemo
Day Oct. 29-Nov. 2 Immunotherapy
Day Nov. 5-23 Oralchemo
Day Dec. 3-7 Immunotherapy
Day Dec. 10-28 Oral chemo
Day Jan. 7-12, 2002 Immunotherapy
Day Jan. 14-25, Accutane
Day Feb. 4-8 Immuno if HAMA
Day Feb. 11-22 Accutane
Day Mar. 4-8 Immuno if HAMA
Day Mar. 11- 22 Accutane
Day April 1-5 Immuno if HAMA
Day April 8-19 Accutane
Day April 29-May 3 Immuno if HAMA
Day May 6-17 Accutane
Day June 3-14 Accutane
Day June 3-7 Immuno if HAMA
Day July 8-12 Immuno if HAMA
Day Aug. 12- 16 Immuno if HAMA
Day Sept. 16-20 Immuno if HAMA
THEN IT"S JUST TESTING, DON"T KNOW HOW OFTEN!!!!!!!!!
Thursday, July 05, 2001 at 01:37 PM (CDT)
My sister's friend Evelyn sent my sister an article that she ran across. Apparently my sister had been telling us about it but we had our minds preoccupied and really didn't think much about it. It sounded interesting but we weren't quite sure what she meant. Something about an article and some litle boy with Joey's same disease. A few days later my sister finally brings the article to the hospital. I read the article and felt relief. A little boy named Houston had Neuroblastoma, he was 4 years old when he was diagnosed. His tumor was the size of a football when it was discoverd. He started treatment with chemo and the chemo did not shrink his tumor. It continued to grow. Houston's Mommy decided to look around for more information and she asked other parents on the internet if they knew of anyone that could operate her son to give him more time to live. Many people reffered her to Dr. LaQuaglia in NY at Memorial Sloan Kettering. She wanted to buy her son some more time by her side. By this time the tumor was the size of a basketball. No one would dare touch him much less open him. Dr. LaQuaglia told that Mom, "IF I go in I take it all out, otherwise I don't go in." From what I understood was he would either live or die at the operating table, there was no coming back. But what choice did this mother have? Give her boy a chance of life or watch him die. Those were her choices. Thank GOD for Dr. LaQuaglia. He gave her a chance for hope.
After reading that story I thought. Well, if he can remove a tumor that size and that complicated, he shouldn't have a problem removing Joey's. Fred read the article. He also found hope in it. He thought it was a back issue. When he turned to see when the article was published it was the Parents November issue of 2000. It was the new magazine for the upcoming month,it had just been published. We were still in October. Fred had to contact the Doctors. Dr. LaQuaglia the surgeon and Dr. Cheung the head oncologist.
After speaking with them he was very impressed and he felt that they were ahead of the other treatments. The way he explained it to me was that other hospitals were reading the books about what to do with Neuroblastoma. These people were writing the book. They were ahead in treatment by about 10 years. They were doing the newest things and they didn't have to wait for beaurocratic paperwork to use the things that were working. Other hospitals were doing things that worked but sometimes children relapsed and then they had to end up in Sloan Kettering anyway and try the new protocols because they were ahead of the game. He flew to meet the Doctors with his brother Charlie while we were in ICU waiting for the draining to stop. He came back very impressed and told us we were going to NY. The protocol was going to be 2 years. We had to save Joey. They told us at Miami Children's "Don't even THINK about having surgery." It was too complicated, too risky, no one goes there that's God's country as someone told us. Dr. LaQuaglia is a man of GOD! He blesses his hands before every surgery. He takes a rosary in to surgery which he carries in a little pouch. He gives praise and thanks to God for his gift. That must be why he can do this and God has given him the special gift to save these children and give them hope of life.
Now, the next hurdle was how do we get to NY? I packed in 4 hours, left all my clothes on the floor for Fred to pack. Got clothes for myself, Freddy and Joey and a few necessities. It's amazing how you realize how little you really need. My mother asked my sister to watch Freddy , our son while whe went home and packed, she said her goodbyes to my father. She told him it was temporary and that I needed her, that Joey and Freddy needed her and that she wanted and felt she had to do this. She wanted to help us. My father completely understood. He was never away much from my mother and I know it's been tough for him to be alone. Thank GOD for our parents. Jorge and Gisela, my in laws, Freddy's parents agreed to help us monetarily while we were away. Without their help this would have been a completely different and much harder experience. They have made it as bareable as possible within the circumstances. We live in a nice 2 bedroom apartment in NJ because NY was just too ridiculesly expensive and we are about 20 minutes away, right over the Hudson river. Many families that come out here have to live in the Ronald McDonald house, which is for families that have terminally ill children and need somewhere to live that isn't too expensive. They charge $20 a night. It's like a hotel room according to what Fred told me. That's where we will be staying for our future visits but because we knew we would be here for quite some time it was nicer that we were able to have an apartment.
Our friend Alex Fernandez was generous enough to help us get to NY. He knew we needed to fly Joey out without exposing him to people because he was neutropenic (had no white counts) from the chemo and could get very sick. He arranged for us to get a private jet plane to fly us out after talking with John Henry. We will never be able to thank him enough. He made it possible. GOD helped us get out. We left the very next day and Dr. LaQuaglia was waiting for us. Joey flew with a bag coming out of his tummy. We took very little things with us on the plane and the rest was shipped. Joey and I went straight to the hospital. We would start chemo right after Thanksgiving. Although alot had happened in our lives, it had been turned up side down, there was still alot for us to be thankful for. Thank God Joey survived the surgery. Thank God we found Sloan Kettering and the Doctors. Thank GOD for our friends and family that were helping us get through this nightmare. Thank GOD!!!!!
Thursday, July 05, 2001 at 12:32 PM (CDT)
I will try to summarize what has happened to Joey since his diagnosis on October 17, 2000. Joey turned one year old on
October 15, 2000. It was a week day I believe so we had family over at the house to cut him a cake. We had a lot of finger food and nice company. Joey wasn't feeling great. He seemed a little down. We thought he might be coming down with a cold. The next day Fred left for work and Joey had a very ugly poop. It seemed too dark, almost black. I called Fred and told him and he said to watch how the next poop was. Later that day he pooped again and Fred was there to see it and he said it was definitely black. We were concerned because we know that it could mean that he was bleeding internally, something like and ulcer. We called his pediatrician at home. He told us to watch him for the next 24 hours, that possibly it could've been the mixture of different foods he had the day before which he is not accustomed to having. I had already decided I was going to take him in to the Doctors office anyway just so he could take a look at him. The very next day, October 17, I was getting the kids ready. Freddy was going to preschool where he had started in September and I was going to take Joey to the Doctor. As I was getting the things together I see Joey acting like he's going to throw up. I ran to pick him up off the floor where he was playing with Freddy and I ran to the bathroom with him. I wanted him to throw up in the sink rather than on himself. As we get to the bathroom he starts to spit up. He spit onto the sink, it was red and it was blood! My heart sank! What was wrong with my baby? There was something very wrong. I knew blood was not good. I ran to call 911. I wanted someone there fast. I called Fred, he was turning back around to come home. I called the pediatrician. The firemen checked him out. They got to my house within minutes. They didn't find anything wrong with him. Fred had called Charlie (his brother who is also and Internist and lives very close to us) to see if he could make it to my house quickly and take a look at the baby. They both seemed to get there within seconds of each other. I was very nervous. The pediatrician said to go to the hospital that we would need to run some tests. It didn't sound very good. I thought, what could this be? Poisoning? He ate something off the floor? E-coli? E- coli was my greatest fear. What was wrong with my baby?
We went to the hospital. Miami Children's where my pediatrician told us to go. Once we got there they started by take some blood. He started crying, I was crying. I hate to see my children go through pain. That would just be the beginning. A little later in the day they had to place an IV (on his tiny arm). Fred and I decided to take Freddy back home because we didn't know how long we would need to be in the hospital. It seemed like it was going to go on through the night. Little did we know that Joey would not be returning home and we were not to leave the hospital for a month. Fred took Freddy home, my mother left work to take care of him at our house so as to make him more comfortable in his own surroundings. Freddy had never slept without us. This would be the first of many nights without Mommy.
The blood tests indicated something was wrong with the liver. The Doctor who was now in charge, a pediatric gastro-intestinal specialist palpated his tummy and found the liver a little larger than usual. He decided to zero in on it. We had to do an ultrasound. Joey didn't like that either. We were in a dark room, they put a jell on his belly and pressed down with a rolling type of device. The screen picked up black and white pictures of his insides. I was trying to look but had no idea what I was seeing. I tried looking at the technicians face to see if I could read any type of expresion, like good...bad...but I really couldn't. He called a lady over after a while of looking around and she came to look at the images. Now it was getting scary. What did they see? Why couldn't they tell me? This was ridiculous, we're the parents, tell us. I tried to talk to see if I got a response, fishing around because I couldn't wait. I said, "So, do you see anything?" The lady, not very empathetically said, "Oh believe me, you have reason to worry." Great. That's not what I wanted to hear. What did she mean? She doesn't know anything. I'll wait to hear what the Doctor has to say. We were wheeled back to the ICU, which is where we were to spend the night because he was so little and I guess, critical. Later Fred tells me, with the Doctors, they found a mass. A MASS. A mass. A mass. What does that mean? A tumor. They found a tumor. Behind the liver pressing on to the liver and pushing important organs and veins out of their usual place. That explained the black stools and the blood. The tumor was large. It was about the size of a grapefruit, 10cm. How was that possible? Where was that thing hiding? His tummy looked normal. He didn't look like there was anything in there that wasn't suppose to be there. My poor baby. He must be having pain. He can barely talk. He can't tell us he's hurting. Are you sure? I can't believe that, I need to see it. You must have the X-rays mixed up, that has to be someone else. That can't be Joey. Joey is fine, he's perfect, this is a huge mistake. GOD what are they saying?
The CT scan confirmed the tumor. It was large, it was metastisized (spread) and it was in a very delicate are of his body. There were major arteries encapsulled within the tumor. tumor. tumor. tumor. Do you mean CANCER? My baby has Cancer? Cancer? It can't be possible. GOD why? WHY? WHY? My beautiful baby boy. My perfect baby. Freddy's perfect baby. Freddy's perfect baby brother. Our beautiful baby quite, loving boy has cancer. NEUROBLASTOMA. What a terrible ugly word. What a terrible ugly name.
Neuroblastoma. It is a very rare childhood disease. It is usually diagnosed before the age of 2. Only 500 to 700 children have this disease a year in the US. They don't know the cause, they are working on the cure. It is one of the worst aggressive childhood cancers. 15 years ago children with nueroblastoma died. There was no cure. They are working towards the cure. Some children are considered cured today but they don't know how long they live because it is new treatment.
Joey's tumor is stage IV, metastisized onto the liver. Because he was diagnosed at a year and 2 days we were wanting to believe that he was a stage IVs. These children have a better prognsis. But it would turn out that Joey would not fall into that category.
The next day Joey had to go to have an immediate biopsy. We didn't think to question the surgical team, we thought he was between life and death. They had to move fast, the tumor was compressing major arteries and they didn't know how fast it was growing. We stayed the night at the hospital in ICU. The next day they sedated him. He had never been sedated. It was scary but it was the least of his problems. He left laughing because of the medication, we stayed crying. Our beautiful baby boy was sick. He was really, really sick. All we could do was pray.!!! GOD please get him through this.
They weren't sure going into the operation if they would do a full incision or perioscopy. The ended up doing the perioscopy. He had 5 incisions, very small on his tummy. They took pieces of the liver and of the tumor to confirm that it was Neuroblastoma. It was. Our baby had CANCER.
The oncologists wanted to start treatment right away. They wanted to shrink this thing before it grew any more. I felt rushed. I was numb. This is going too quickly. I need to think, but there is no time. We would be on a protocol. Every body is treated the same in the US with the same guidelines. But I had doubts. There were different protocols, stage 1, stage 2, stage 3. Some were newer than others, some were experimental. I had to learn but I had no time or energy or desire to read anything. I wanted Joey to feel better. He was feeling worse and worse every day. We decided to start the chemo. His tummy started to grow. He was swelling. He looked uncomfortable, he could barely sit or smile. We kept telling the Doctors that we thought he may be retaining liquid, they insisted everything was normal, children swell after operations, its gas they said. Well, it was also liquid. The baby started to leak bile from his belly button. They had to perform an emergency operation to irrigate his stomach because he had loose bile throughout his tummy. No wonder he felt so uncomfortbale. You could hardly touch him. He had IV's on his arms and legs, bags on his pipi for urine collection, bags coming out of his tummy for liquid to drain out. They had poked and prodded every little hole in his tiny body. My beautiful baby boy. What did you have to endure? WHY GOD WHY?
He now had a major incision on his tummy after they went back in. He continued to leak and now he had 3 bags to catch the draining liquid. I was under the impression they were going to go back in to fix the problem but apparently they couldn't fix it. He leaked for 3 more weeks. The chemo was postponed for the moment. He had to recover from the surgery. We couldn't even think about the Cancer, we had to think of getting him through the surgery.
Then, something miraculous happened. We believe it was a sign from GOD to save Joey's life. GOD wants Joey to live.
Wednesday, July 04, 2001 at 01:37 PM (CDT)
Tuesday, July 03, 2001 at 02:42 PM (CDT)
This will be our first entry on Joey's web page. I will attempt to briefly summarize what has happened sinced Joey's diagnosis on October 17, 2000. Just two days after his first birthday. Joey was diagnosed with a rare type of childhood Cancer, Neuroblastoma. This web site will be used to keep those of you who care updated on his treatment. We thank you for your support. It means the world to us! Please check back for additional updates and tell others about the web site.
Click here to go back to the main page.
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