Journal History
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Wednesday, November 14, 2007 9:20 AM CST
WE ARE HOME.....
The transfer home went very smoothly. The new vent is working well and we are back to our baseline of oxygen levels.
We have decided to wait on doing the surgery. We are trying some other alternatives first. Dylan now has a trach that has a cuff (balloon). When we inflate the balloon it seals off the lungs. The only thing that goes in and out is the breaths from the ventilator. When he is cuffed, he is not able to talk because the air does not pass through the vocal cords. It is very easy to inflate and deflate the cuff, so when he has something to say and we can't read his lips, we just deflate the cuff and he can speak.
Now, that we are home, I have alot to catch up on on.It's amazing how far you get behind with a 10 day hospital stay.
I will post another update in a few days to let you know how we are all settling in.
Thanks again for all your prayers and guestbook entries.
Love,
Sharon and the boys.
Monday, November 12, 2007 10:45 AM CST
OK, it's official. The new ventilator is getting delivered today at 2:00 and the hospital requires him to stay on the new vent overnight. If there are no problems we will be bringing Dylan home tomorrow. YEAH. This has been a long 10 days.It will be nice to have all 3 of my boys in the same place again. Most people do not realize how special it is to have your whole family together in the house at bedtime.
Love to all and thanks again for all the prayers, gifts and notes in the guestbook.
Sharon and the boys
Saturday, November 10, 2007 12:41 AM CST
Hi Everyone,
I am happy to say Dylan is doing much better. We are switching his ventilator to the new and improved.It is small and light, campared to our 35 lb box. It looks like a lap top computer. We are required to stay in the hospital on the new vent for 24 hours. The doctors will put him on it on Monday, so if all goes well we should be coming home on Tuesday. His oxygen levels have been great for the past 48 hours and you can tell he is feeling better because he is getting annoyed with the hospital and their rules...=)
I will update again on Monday. Thank you to all for your prayers, gifts at the hospital and notes in the guest book. Dylan loves to read what everyone writes.
Love Sharon and the boys.
Tuesday, November 6, 2007 11:15 AM CST
Novenber 8th, 2007 UPDATE
The last 24 hours Dylan has been responding to treatment. We have been able to keep his oxygen levels up to a safe level. In order to do this, we had to change his trach (tube in his throat). Now at the bottom of his trach there is a cuff (small balloon), to keep the air from escaping from around the sides. Because of this change, Dylan is not able to make any sounds when he speaks (there is no air passing through the vocal cords). For those of you who know Dylan (the boy with the gift to gab). This has made it very difficult for him. They do have him on a slight sedation (happy drugs) to help keep his anxiety levels down. He is still very sick and we don't expect to get out of the hospital before maybe Tuesday or Wednesday of next week. The plan is to get him at a safe managable Oxygen level to come home and finish his recovery at home. He will need a PICC line (semi permanent IV line) so we can administer antibiotics at home. When he makes a full recovery we will plan his surgery to repair and tighten the muscle at the top of his stomach.
Thank you everyone for your prayers an notes in the guestbook. I am printing them out today and taking them to the hospital for Dylan.
We love you all,
Sharon and the boys
will update on Saturday.
Hi Everyone,
Again, I will be using this site to keep everyone updated on Dylan's condition.
Saturday Nov. 3rd, Dylan was rushed to the hospital. His heart stopped. He was quickly revived and after the usual FULL battery of test, we were told that he is aspirating on his stomach content. He has severe phnuemonia. They wan't to do surgery to band the top of his stomach to prevent stomach content from going up. He is very sick and they will not do surgery till he has gotten over the phuemonia.
My mom and I are taking turns between the hospital and home. I will updat Dylan's condition when I can.
Please keep the prayers coming.
Love to all,
Sharon
Friday, March 9, 2007 10:32 AM CST
Thank you Allyson Bird for the beautiful write up in The Palm Beach Post, today. Dylan thought it was very cool that you called him the "hippest" 10 year old on his block.
Also, a special thank-you goes out to The Port Saint Lucie Police Dept., for your continued support and and caring thoughts for Dylan and my families needs. Sgt. Dobler, Sgt. Brisky, & Officer Disken are true angels.
Seven years ago when Dylan was diagnosed with the brain tumor, the family was financially OK. Obviously, our concerns at that time were for his health and treatment. We made adjustments and changed priorities to get him what he needed. This has been such a long and hard battle that all financial means have been depleted. It is amazing how fast you can go from riches to rags. It is so tough being a caregiver of someone who is terminally ill, let alone a child but, when you add the stress and responsibility of all the financial burdens on top, it's enough to wear you out. Port Saint Lucie is a wonderful and caring community and they have wrapped there arms around my family and I am truly thankful for all their help and support.
If you are a first time visiter to Dylan's web page, you are welcome to read through the previous post to understand how Dylan has progressed through this illness. Also, please take the time to sign our guest book. Dylan loves to read the comments that everyone leaves.
Thank you and God Bless,
Sharon and the boys
DONATION INFORMATION
For Benefit of Dylan Ray Picariello
Bank Atlantic
1549 St. Lucie West Blvd.
Port Saint Lucie, Fl. 34986
Acct # 1105162305
OR
Contact Sgt. Dobler
The Port Saint Lucie Police Dept.
(772) 871-5000
OR
You may also make a donation through Paypal at:
Dylansworld@aol.com
Friday, December 29, 2006 10:19 AM CST
HAPPY HOLIDAYS AND HAPPY NEW YEAR TO EVERYONE !!!
We had a great Christmas. Thanks to our community and the Port Saint Lucie Police Dept, we had many presents under the tree.
There has been an account set up for the benefit of Dylan. Here is the information for anyone interested:
For Benefit of Dylan Ray Picariello
Bank Atlantic
1549 St. Lucie West Blvd.
Port Saint Lucie, Fl. 34986
Acct # 1105162305
We do have some great news, Dylan's PICC line was removed yesterday. He has had that PICC line for almost 3 years. We have not had an infection that has required IV antibiotics in over 6 months, so we decided to pull the line. YEAH... Dylan says he feels like a free man. (He is so funny).
We have an appointment to finally get him fitted for hearing aids, after 2 surgerys with ear tubes, the doctors finally thing that hearing aids will help him. He does have permanent damage to his left ear with a 40% perferation to the ear drum.
God Bless and Happy New Year,
Sharon
Thursday, December 14, 2006 2:58 PM CST
HAPPY HOLIDAYS
Hi Everyone, We have great news. The Port Saint Lucie Police Dept. has adopted our family. We have been in serious financial need for awhile now. The bank is forclosing on our home and Dylan's financial needs have just devastated me financially. Today, all 3 local newstations were at our house with Cheif of Police John Skinner and Sgt. Rod Dobler from the "Blue Angels". They were here to put out a plea to our community for some financial help. They also brought many presents for the boys for under the tree. They even brought us the Christmas tree.
I want to thank the Port Saint Lucie Police Dept and the Blue Angels for their caring concerns and helping me have a nice Christmas for my boys.
GOD BLESS,
Sharon
Tuesday July 12, 2005 9:00pm CDT
| Thank you Prayer Bears Dylan loves all his happy mail. It's amazing how happy "happy mail" makes a child. He also likes that so many people are praying for him. Thank you everyone. |
Monday, April 18, 2005 10:50 PM CDT
Hi Everyone,
Just a quick update...Dylan will be admitted to PICU on Tuesday. He will be getting some heavy duty IV antibiotics. We just found out that he has a third Bacteria growing in his lungs. We will probably be in PICU for a week, if all goes well. The concern is the anbiotics they are going to use can be very harsh on his kidneys and liver. Please keep the prayers coming. I will update when I can.
God Bless,
Sharon
Sunday, April 17, 2005 10:37 AM CDT
Hi Everyone,
The latest news on Dylan is not that good. His urine culture game back positive for 2 very drug resistant bacterias. Pseudomonis and Enterococcus. Both are very hard to treat and will most likely return in a few weeks if treated. Treatment would require a week long stay in the PICU in isolation. The urologist recommend not treating these bacterias due to the intense treatment and the likely hood of them returning. We are waiting for some other opinons from other doctors. Hopefully we will have some answers Monday.
Dylan really hasn't had much change. He has a few hours in the morning when he is aware and acting like himself. Late morning is when he starts to become lethargic. He gets a thought in his head and that thought plays over and over all day. He doesn't seem to be aware of anything else..
Please keep the prayers coming and I will update as soon as we know something.
God Bless,
Sharon
Tuesday, April 12, 2005 2:29 PM CDT
Thank you everyone for your continued prayers. I know I haven't updated in a while. It seems like Dylan starts to bounce back and then something else goes wrong. Now, we are starting to think he is having some kidney issues. When we see the specialist, I will post again to let everyone know what is going on. Please keep praying for Dylan.
God Bless,
Sharon
Sunday, March 20, 2005 1:28 PM CST
Dylan is home from the hospital but, still fighting real hard to get better. It is taking him a longer time to pull out of this funk. Please keep the prayers coming.
God Bless,
sharon
Thursday, March 17, 2005 9:39 AM CST
Hi everyone,
I know I have not been doing a good job updating Dylans page. It seems the only time I update is when he is not doing very well. So unfortunately that means that we are needing your prayers again. Dylan was admitted to The PICU on Sunday with phnuemonia. His white blood count was very high. They have him on 3 antibiotis. His numbers have been getting better but he is slipping into a deep depression. We are going to try to get him home as soon as possible to see if he will perk up. OK, I am off to the hospital, I will update as soon as I can.
Sharon
Saturday, January 8, 2005 10:21 PM CST
Happy New Year Everyone!
Dylan is having another tough time right now. We had to call rescue and bring him to the ER again yesterday. He was unresponsive and we couldn't wake him. The doctors started running tests to try and figure out what was wrong. The diagnosis this time is pneumonia. Both lungs.They started him on IV antibiotics and sent him home on antibiotics that need to be injected in his butt everyday. The antibiotics that they are giving him are real strong within hours his allertness was coming back. He seems better today but we are very aware how dangerous pneumonia can be for someone who is ventilator dependent. Please keep Dylan in your prayers.
We have had another horrible thing happen last week. Dylans van is out of comission. We have to put a new engine it. They told me $4000. It looks like we are going to have to have a fundraiser. We are going to have a yardsale this weekend to try to help raise some funds. all the neighbors have been contributing. My garage looks like a thrift store.
We have just had the hardest time trying to get back on our feet since September when the 2 hurricanes hit.
We did have a very nice Christmas. Dylan had a very ORANGE Christmas. He is a Tony Stewart fan and recieved a lot of Tony stuff. He even got a personalized autograph picture from Tony himself.
Please keep our family in your prayers.
God Bless,
Sharon and the boys.
Thursday, December 23, 2004 11:12 AM CST
Hi Everyone,
Dylan is still doing good. I think we are over the hump. He still has some memeory loss but, we will just deal with it.
We are wishing everyone a very Merry Christmas. We hope all your holiday wishes and prayers come true.
God Bless,
Sharon and the boys
Wednesday, December 15, 2004 6:47PM CST
Hi Everyone, Dylan loves dogs and thought this was very cool. Thank you Tony, Ed and Sean for making this a special day for Dylan. Michelle, you are an angel for making this happen for Dylan.
Just wanted to let everyone know that Dylan is still improving everyday. It is amazing what steriods can do. We are actually starting to make Christmas crafts all over again because he doesn't remember making them the first time. Now, we have lots of Christmas ornaments to give away this year.
Yesterday, Dylan had some visitors from the Saint Lucie County Sheriff's Office. Master Deputy Tony Cavallaro and his friends, Sergeant Ed Rinaldo and Deputy Sean came to visit and they brought their K-9 partners. Here is a picture of Tony's dog Arko.
OK, got to go. I've got dinner cooking, laundry that needs folding, homework that needs to be checked and a baby to bathe. KEEP THE PRAYERS COMING.
GOD BLESS<
Sharon and the boys
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Thursday, December 9, 2004 8:13 PM CST
This journal entry is very hard to write. My sweet Dylan is again fighting for his life. It just tears at my heart to see him fight so hard against a battle the he will eventuly lose one day. He is truly my hero.
On Nov 23 Dylan started having seizures. We called 911 and brought him to the hospital. Come to find out his sodium level dropped dangerously low. Because of the rapid change in sodium and the seizures he has suffered some swelling in the brain. We were in the hospital for a week and then came home. Three days later we had to call 911 again. This time it was high sodium. Again the rapid change in sodium has caused even more swelling in the brain.
We do have Dylan at home and are monitoring his sodium levels.But, because of all the swelling in the brain I am watching my little guy slip slowly away. He does have some awake time but he is not talking. We are starting to keep family close and at bedside.
Please keep ther prayers coming for Dylan.
God Bless,
Sharon
"Dear Lord, Thank you so much for Dylan. He is truly one of your greatest creations. I am truly blessed that you gave him to me, sickness and all. Dylan has taught me so much in the short time that he has been with me, more then I have learned my whole life. Lord, one of the greatest gifts Dylan has given me is a stronger relationship with you. You have given our family the strenght to fight this sickness with everything we had but,it is starting to look like we are going to lose this battle. You are the only one who knows when Dylan's time on earth will be done. LORD, PLEASE DON'T LET MY BABY SUFFER.
Amen
Wednesday, December 8, 2004 10:05 AM CST
Hi Everyone,
WE ARE NEEDING PRAYERS FOR DYLAN.
Since Nov 23rd Dylan has been in and out of ICU with extreme low and high sodium levels. These rapid changes has caused him to have seizures which has caused some edema in the brain.
Please just keep praying.
I will update when we have some news.
Love Sharon
Friday, October 1, 2004 2:48 PM CDT
Yes, we are still here. Can you believe TWO hurricanes? This has been an adventure to say the least. We have had to evacuate 2 times with Dylan. It has not been easy. Our biggest need of course is electricity and that has been very scarce. The first hurricane (Frances) was the hardest. After coming back from evacuating to the Fl. Keys, we were with out power for 8 days. We ran Dylan's ventilator and all his other equipment by generator. Had to wait in line all day just to get gas for the generator. The second hurricane Jeanne was a stronger storm but, I think we were better preparred. We already have our power back too. YEAH.
I want to extend our Thanks to our relatives in Kentucky for all the great CARE packages that have been sent. The supplies and $$$$ have been a big help.
The damage in the area has been pretty bad. The kids have been out of school now for 4 weeks. The have determined that half of our 36 schools are not useable.
Our house did well. We can still live here. We have minor roof damage but lots of stress cracks in the walls and ceiling. The screen porch lost all the screens and the pool has lots of stress cracks. You wouldn't want to swim now any way the pool looks like a great place for the Locnes monster. Todd and I got up on the roof yesterday. The gutters were packed solid with mudd (4 inches deep).
Mom and Bill's house took more damage then ours. They have a lot of roof damage. They got a lot of water in their house and are dealing with mold issues now. They are still with out power and you can literally watch the mold grow up the walls. If anyone is sending another CARE package we can use Sudephed, the mold is getting to everyone.
Thanks for everyone who is checking in on us and keeping us in your prayers. We are now busy cleaning up and rebuilding our lives.
God Bless,
Sharon and the boys.
Tuesday, July 6, 2004 3:50 PM CDT
Hi Everyone,
I will be updating this week. I forgot just how hard and over whelming it is to have a new baby. We are startiong to get well adjusted now and I am starting to get some time for myself. ha ha. I just thought I would post some pictures for you to look at.
Have faith in me and continue to check back for an update.
Everyone is doing well.
Love and prayers
Sharon
Wednesday, January 14, 2004 1:34 AM CST
Update in Progress. Check back tomorrow. =)
Thursday, December 18, 2003 3:06 PM CST
Ok, So some of my friends (Susan Griffin) is having a tough time waiting for my update. So. I am going to rush through this one just so I don't here any more whinning. Ha Ha. Actually it has been a long time since we updated. Thanks for the push Susan.
Dylan had a MRI the first week of December and again his results were stable. We always hope for more shrinkage but, are very happy with stable. We are going to try to start the process of weaning Dylan off of the ventilator. In order to do this, it requires a hospital stay. He needs to change to a different ventilator and needs to be monitored in ICU, for a few days, while this is done. We are hoping to do this after the holidays but, before the baby is born. We don't know if Dylan will be able to gain any breathing on his own but, I feel we owe him the chance to try.
This is a very joyous time of year for our family. It marks the 2 years we have had with dylan that our doctors told us we wouldn't have. And, we truly celebrate everyday as it is a gift from God.
We have solved the "Name Game" with naming the baby. Todd and Dylan have been giving me a lot of choices. Dylan's first choice was Stinky. We laughed and then we got serious. Todd's favorite name was Cooper and Dylan's favorite name was Michael. So, the baby will be named Cooper Michael.
Dylan had a special visitor this week.His name is Matthew Hadden. He was Mr. Florida in 1999. Matt is very involved with the community and loves to give to kids with needs. He showed up at our home with an autographed photo and gifts for Dylan and his brother Todd. Matt and Dylan spent about an hour hanging out and becoming buddies.(It took about that long to put together the Spiderman helicopter). Dylan is looking forward to Matt's next visit.
We are planning another big event for Dylan next week but, we are keeping it as a surprise for Dylan. He just doesn't have any patience. Hint: The folks from Patrick AirForce base in Cape Canaveral are planning this surprise.
Well, I hope everyone is enjoying the holiday season. We sure are.
Love and Prayers,
Sharon
Wednesday, December 17, 2003 1:05 PM CST
HAPPY HOLIDAYS
Update in progress.
Tuesday, October 28, 2003 6:47 PM CST
HAPPY HOLIDAYS
Update in Progress
Thursday, September 25, 2003 9:48 PM CDT
Hi Everyone, Another newspaper:Palm Beach Post
Once again, I have to apologize for not updating Dylan's site. Normally no news is good news. Unfortunatley, we had quite a scare about 2 weeks ago. Within a matter of hours, Dylan slipped into a coma. We took him to the ER in West Palm Beach. Dylan has never been to this hospital before and as soon as the ER docs heard "Brain Tumor" they immediately wanted to transfer him out of there. We were able to talk with the PICU doctor (who was wonderful) and decided to admit him there. Of course the doctors were again trying to paint a horrible picture, convincing me that this was probably the end. I had to let these doctors know that we are not in denial about Dylan's condition but, we were not giving in and were not going to give up hope.
OK, to make a long story short (4 days in hospital),Dylan is home and back to his normal. Dylan's blood work came back with low sodium. The low sodium put him into the coma and he also presented with seizures. After 24 hours of treating the low sodium,Dylan opened his eyes and said "Mommy". OK, I was able to relax.We did make some new friends at St. Mary's Hospital and I have to give Barabara Abernathy, from the POST team a thousand and one THANKS. Your caring made our stay so much easier.
Wednesday the 24th, Todd''s 9th birthday. The family was honored and treated to a special day by LifeStar. It is a trauma helicopter. They took Dylan, Todd, grandma, and myself up for a joy ride. When we arrived there was 2 TV stations there and 4 newspapers reporters.The ride was great. Dylan got to ride on the stretcher and look out the windows. We have pictures coming we will post them on the site.Here are the newspaper articles:Port St. Lucie News w/link to Ch5 news
Love and prayers to all,
Sharon
Saturday, August 9, 2003 11:02 AM CDT
Well hello....
Yes, it has been awhile since I updated. We have lots of things going on. School starts here Monday the 11th. We went to the school last night to meet the new teachers. Todd has a lot of kids in his class from last year so he is content.
The new picture of Dylan in the stander was taken this week. He was not happy being in it and did not want me to take his picture. This stander is a loaner to see if he can tolerate it. They cost about $2000. It really helps his body in many ways to get in the upright position.I know it is not very comfortable to be strapped into. But, he did very well in it.
News on the fundraisers and van: Fundraising is going well. "Celeberties fore Kids" has offered to match all funds raised by August 15th, to help purchase the van. We are getting close to our goal. Thank you to all that are helping us get this van. The next event is going to be a yard sale on Aug. 15th & 16th. It will be at my house. My garage is filling up fast and my mom and I will be pricing things all week.
The gentleman who we are buying the van from called today to tell us the van will be ready by the end of August. It is there old van. They just purchased a new van and had to wait for parts that were back ordered to finish customizing it for their son. The van we are getting was one owner. It is a "91" GMC, 73K miles. I know 12 years old but this van was real well cared for. Check it out for yourself:
ISN"T SHE A BEAUTY !!!!
Dylan saw the orthopedic doc a couple of weeks ago. They have ordered a custom brace for his left elbow and left wrist/hand. They also ordered a neck brace. The muscles are getting very rigid. They also want to give him Botox shots to try to relax the muscles a little. We will see how that goes.
Even though over the past 18 months Dylan's tumor has showed shrinkage or stability,his condition has deteriated over the last 6 months. We are going to go see our nuero-surgeon next Monday. Not, that we plan on any surgery but, he is the only doctor that will review the MRI's with us. What we think is happening (scary thought)is the deteriation that we are seeing is actually permanent damage from radiation.We will get a better idea on Monday.
God Bless everyone,
Love and prayers,
Sharon
Friday, June 27, 2003 12:53 AM CDT
Hi Everyone,
I am sorry it has been about 2 weeks since I have updated this page. Everyone is doing fine, we have just been very busy. We have a very busy July ahead of us. We have family coming to vist over the next 2 weeks, which will keep us busy. Dylan's birthday is on the 12th, he will be 7 (ha, doctors didn't hink he would make it to his 6th birthday).WE have started Dylan back on steroids to help reduces the swelling in the brain, it seems to help alot but, boy do they make him eat. He has gained about 10lbs. He weighs about 75lbs now and he is heavy to transfer.
The day after Dylan's birthday, we will be attending a fundraiser spaghetti dinner for Dylan. There is a local restaurant here in Port St. Lucie that is donating the location and some of the food.The funds that are raised will be going towards the purchase of a handicap van and other equipment and other financial needs. We have made due the best that we can with my vehicle. Dylan has grown and so have his needs. I am having a very hard time just trying to get him back and forth to doctor appointments. It is very difficult, so if we don't have to go out, we don't. That is real tuff on Dylan. He likes to get out of the house and go see things.We are like prisoners in our home.
Thursday, June 12, 2003 3:57 PM CDT
Hi Everyone,
What a nice day we had today. Jake Griffin and his mommy (Susan) came to visit today. Susan brought her camera so we could get a picture of the two boys together for the website but, we were all so busy talking and playing, we completely forgot to take a picture. Oh well, we will have to make sure we take the picture next time.(Right Susan?)
I want to thank the person who anonymously donated a bottle of Protocel for Dylan. It really is a daily financial struggle for me and this is one less thing I have to worry about for another 2 months. God will bless you for your kindness.
Right now we are taking one day at a time with Dylan's recovery. With Protocel it is a "one step backwards for every two steps forward" process. Dylan has been showing huge deficits with movements of his arms and legs for some time now. I am starting to think that we are dealing more with permanent damage from radiation. All we can do is continue to work with him everyday and just see if he regains any strength or coordination.
We are also dealing with a wound on Dylan's neck. It started as an irritation from the trach ties. Dylan has not been able to hold his head up straight and the ties are digging into the skin.We are treating and cleaning the area twice a day but it continues to get worse. There just isn't anyway to give the neck a break because we have to tie the trach around his neck. We will be seeing our oncologist on Monday, hopefully he will be able to help us.
God Bless,
Sharon
Thursday, June 5, 2003 3:15 PM CDT
It really saddens my heart that I have to write this on my sons web page......
There is apparently a group of people who don't agree with my opinion on some things that are going on in my personal life.PLEASE...PLEASE...PLEASE....
don't use my sons web page to voice your opinion. My e-mail address is on the bottom of the page.
This web page was set up for my terminally ill son. It is to keep everyone updated on his progress. Dylan loves to come to his site and read the happy e-mails & positive thoughts everyone has for him. Even though he is only 6, he reads very well.
Luckily I caught the guestbook entry and deleted it (and will with others).
Now, to the point of this web page...
Dylan is having a tough day today. He has picked up a stomach virus and has bad diareaha (sp). Even though he stays at home, the virus still get in. Since he gets theraphy of some sort everyday and the therapist see other sick kids the germs are always around.
For those of you who take care of a bed ridden person, you could imagine what our day is full of.... lots of bed changes...I know what you were thinking...
I'll post again soon.
God Bless,
Sharon
Sunday, June 1, 2003 9:32 PM CDT
Wow, I can't believe it is June already. Six more weeks and it will be Dylan's 7th birthday. And he already has a list of things he wants. Everytime a commercial comes on TV..."Mom, Mom, MOM..that's what I want for my birthday".
Things have been improving for Dylan. The past couple of months he has had lots of weakness in his left side, to the point that he was not able to stand to transfer to his wheelchair. This week he has started standing again,(my back is happy for that) but still not taking any steps.He has also regained some use in his left arm. Right now I would say he has about 25 percent use of his arm and 5 percent use of that hand.
We did finally get an appointment with an Orthopedic doctor, the one we have used in the past is in the hospital with phnumonia. We were not going to be able to see him until July. When this new doc walked into the room his jaw about hit the floor, appently he doesn't work on kids as medically needy as Dylan. He really didn't know how to advise us on most of our concerns. We were able to get full spinal x-rays and were assured that Dylan's scoliosis was not needing any treatment at this time. So, when we got home we called and booked that appointment for July with our regular Ortho.
Friday was a real BIG day for us. For one thing it was the last day of school. Todd will be going into the 3rd grade next year and Dylan will be going into 2nd grade. Friday night was Todd's last baseball game of the season. His team went all the way to the championship. We had to play the Red Sox's. We have played them 3 times already and have never won. We started the game knowing that if we lost to them again we would still have 2nd place. Well, we didn't get 2nd place we got 1ST place. What a celebration we had. We had lots of friends help us load Dylan in the car so he was able to attend the game. He was so happy that Todd let him carry his trophy. Life would be so much easier if we had the handicap van. I know God will provide.
There are days when this burden seems to much to bare (being the only parent, many financial needs,trying to always be available to Todd, and try to also take care of my home and myself).I know down the road when I look back on these days, I will know I did my best. Even though we are not like normal families, my children know that they are loved.
I need to ask everyone a favor, we know of a little boy named Rossy, who is also battling a brain tumor. He is having a real hard time right now. He really needs your prayers. Please stop right now and pray for him and his family.
God Bless,
Sharon
UPDATE: Rossy got his angel wings June 1 at 10:30 p.m. We know that he is now cradled in Gods arms. Please pray for the family to help them get through this difficult time.
Sunday, May 18, 2003 8:48 PM CDT
We saw the eye doctor last week. He said we could stop the antibiotic but we needed to continue the artificial tears every hour. Well, don't you know Friday night Dylan spikes a fever and his eye is all red again. Looks like we will be calling the doctor again on Monday morning.
Todd's team finished the season in 2nd place, so we are going to the playoffs. This is so exciting. Unfortunately, we have to play the 1st place team again. That is the only team we have not beat.
Check out the new school photos on the photo page.
Love, Sharon
Thursday, April 24, 2003 8:36 PM CDT
Poor Dylan has been fighting an eye infection for three weeks now. The doctor said it was a bacterial infection but, I think we are getting a handle on it now. Dylan has been OK with all the drops and ointments. He thinks he is a pirate...shhh, don't tell him any different.
I made a decision a couple of weeks ago to put Dylan back on steroids. ugh. He has lost so much use of his left side that I needed to know if we were still dealing with edema or if this was permanent damage due to all the radiation he received. If he regains some movement then we are still dealing with edema, if there is no improvement then it is most likely permanent damage from radiation. We have noticed a slight improvement in the arm, a bigger improvement in his breathing and a huge improvement in his eating. Dylan always did love to eat.
I will post at the end of the week and let you know how he is doing.
God Bless,
Sharon
Wednesday, April 23, 2003 10:57 PM CDT
Thursday, April 17, 2003 10:05 PM CDT
And Happy Spring too. Wow, it is hard to believe it is almost Easter. Where did this year go? I haven't gotten the green egg dye off my counter from last year yet. Oh, well. It is spring break for the kids this week. Todd is with his dad in the Bahamas and Dylan is home with me. It amazes me how much quality time you can spend with your child when it is only one.We got a phone call last week from Todd's coach. Todd was chosen for the All Star's. Unfortunatly it was the same week that Todd was going to be away with his dad. It was a very big and hard decision for a 8 yr old to make...My babies are growing up so fast... With Todd gone this week it has given Dylan and Mom lots of quality time together. Which I think we both needed.We saw a new Oncologist this week, who will be doing Dylan's follow ups. He is in West Palm Beach. The run back and forth to Miami was really getting tough. We will also be going to a new hospital for his MRI. It will be Tuesday the 22nd. I will post the results as soon as I have them. Please say some extra prayers for us this week. We really need to see a change in Dylans tumor again. Please pray for healing. I hope you all have a blessed Easter. I know we will. With the electric wheelchair, Dylan has the ability to find Easter eggs this year. The Picariello's
Sharon, Todd, and Dylan
Sunday, April 6, 2003 9:03 PM CDT
Hi Everyone,
We are back from camp and we had a GREAT time. I have started uploading photos, so please take time to look at them. We are still getting photos developed so check back.
We left for camp after Todd's game (They won). It took 2 vehicles to get us and all Dylan's equipment there. We painted the windows on the van and truck "HONK IF YOU THINK CANCER SUCKS". We got some beeps, some honks,and a few darn near blew our doors off, it made the trip fun.
The first part of the week a cold front came through and we had to cancel one of the pool days, we did manage to get to the beach but brrr it was cold and windy. Dylan had a blast playing in the sand. By the end of the week it warmed up enough to go to the pool. It is amazing to see how they coordinate and assist these ventilator dependent kids in the pool. Look for the picture of Dylan putting his face under water.
Every night was a different theme, western night, luau night,Talent Show night, and carnival night.They even had parent's night out. Yes, we left our kids (in good hands) and went out to dinner.They had a new event this year, it was called "Silly Water Day" but, it was like "Nickolodeon style". Dylan enjoyed watching Mom, brother and nurse sliding through green slime.
We went on a couple of boat rides and a train ride. Dylan really liked all the animals. They had "My Little Farm", "Wild Animal Show", and the "Therapy Dogs". We ended the week at "Hardrock Cafe Miami". If you ask Dylan what his favorite thing was, he will tell you Carnival night. He did real well at the games, got lots of tickets and picked out the prizes he wanted.
I need to give a special Thank you to Dylan and Todd's camp Pals. You guys truly made this a special week for the whole family. Jonathon, Carmen, Alijandra, Eliana, and Ralph, you guys are earth angels.
Now we are home, trying to rest up and get back into the real world again. We are hoping to have a MRI appt. in 2 weeks.
God Bless
Sharon
Tuesday, March 25, 2003 9:51 AM CST
Hi Everyone, Sorry it took me so long to add a new journal. we have been a little busy. Everyone is doing great. We are getting real excited for Vacc Camp. 4 more days to wait. we will leave after Todd's baseball game on Saturday March 29.
Vacc Camp is a camp for children on ventilators and their whole family. This will be our 2nd year going. It is a week long and free of charge. It is provided by the Pulmonology Dept. at Miami Children's Hospital.It is absolutly amazing what kind of stuff they do with these kids. Some of the things we will be doing is: Sailing,swimming in the ocean, swimming in the pool,we also go to Hard Rock Cafe Miami. They have a different theme every night. Western night w/ a barbecue, Luau Theme with a Hawaiian show, and they even have a carnival night with games and prizes. We get to tie dye our t- shirts, there is a wild animal show, magic show, scavenger hunt and many more things.They keep us so busy that Dylan falls asleep as soon as his head hits the pillow. It is just hard to get him to lay down. He is afraid he is going to miss something.
We will post many pictures when we get back.
God bless
Sharon
Saturday, March 8, 2003 9:33 AM CST
Ok , Todd's team won their game today. We were losing 5 -7, bases loaded, Todd's up....Bam !! A grand slam !! 4 more runs...The dug out is now up and roaring...Final score 13 - 7. GO CUBS !!!
Dylan is at 24 hrs, with no oxygen. Just room air...Still holding his oxygen saturation between 92 - 98. Looks like I have 2 ALLSTARS.
Dear Lord thank you for this day !!!
Friday, March 7, 2003 9:30 PM CST
Great news Everyone !!! we have weaned Dylan off all oxygen. He has been on oxygen since November. He is now on room air. This is great for us, one less tube going to his ventilator.
We are all getting excited for VACC Camp(Ventilater Assited Childrens Camp)22 more days.This will be our second year attending. It is a camp the whole family goes to for a whole week. There is so many activities every day. We will be posting pictures when we get back. So check back.....
Monday, March 3, 2003 9:07 PM CST
Hi Everyone, as you can see, i am doing some changes to the web page. Iwas so excited when I learned how to make the pictures change. I am trying to do a chronological photo album from when Dylan was diagnosed to present. Be patient and keep checking back.
Dylan has been recovering very well from his upper respitory infection. We actually weaned him off a lot of oxygen. He is back down to 1 liter,
I gave the boys buzz cuts this weekend. I just can't keep my hands of their heads.(pictures coming soon)
We took Dylan to Todds baseball game on Saturday. boy, was it hot. It was a little to much for Dylan. Todd's team won again. that puts his team in 1st place. 3 - 1. GO CUBS !!! I just love little leauge baseball.
Love to all, Please keep the prayers coming.
Sharon
Monday, February 24, 2003 11:47 AM CST
I am so sorry everyone. This update is very over due. Due to the holidays, a new job, and everyday activities I have truly neglected this update.
Dylan’s most recent MRI was on Jan. 16th. The report states that the tumor is stable. THANK GOD. I did find out that the Radiologist will report a “stable condition” if the changes are not greater than 5%. Of course I had the films plastered all over my sliding glass doors and scrutinized them with the last films. I do see mild changes for the better.
We have recently added another component to our alternative plan. Dylan is already showing positive signs. Hopefully we will see significant changes in the next MRI (due in April).
The date Jan. 16th (last MRI) is very significant. It is 1 year and 1 day after he was released from the hospital. That was when the doctors told us there was nothing else they could do for Dylan. They gave him 2 weeks to 2 months to live. What a great milestone for Dylan. We have celebrated every day of this past year and will continue to do so.
We did have a mild scare this weekend. We had to rush Dylan to the Emergency Room Saturday night. He was running a temperature and we were not able to maintain his oxygen Sats. He was released the same night. They took chest x-rays and some blood work. Everything looked ok. Come to find out he has an upper respiratory infection that his brother Todd was so gracious to share with him.
Todd has been doing real well, he has signed up for baseball. His position is pitcher. He has a lot of action playing the infield. They have played 3 games. Their record is 2 – 1. It looks like they are going to be a promising team. We are hoping Todd makes it to All Star’s this year. Dylan was able to make it to opening game and really enjoyed watching his brother play. We hope to get Dylan to many more games.
Our largest obstacle right now, is trying to get a full size van with a wheelchair lift. I have been doing a lot of research online trying to locate some financial assistance (Corporate grants, Gov’t funding, private foundations). If anyone has any information to share, please let me know. We have fought with Medicaid for a year to get Dylan his electric chair. Now, we have it. It has given him so much independence at home. We are unable to transport the new chair because of the size and weight.
Please keep us in your prayer. If you have the time please sign our guest book.
Thursday, September 12, 2002 at 11:02 AM (CDT)
GOOD NEWS!!! Dylan's MRI showed that the tumor is stable. There is no sign of growth. I was hoping to see shrinkage again but, stable is great. Our next MRI will be in 3 months (around 1st week in Dec.)
Dylan is doing good in school. He is playing a little catch up but seems to be doing well. He is completly wiped out when he gets home. It is tough because he has some type of therapy everyday after school.( P.T., O.T., or speech).
Medicaid has finally approved his electric wheelchair. Thet didn't want to spend the $$$ if he wasn't going to be around long enough to use it. He showed them.When we get the new chair my van is going to be obsolete, so we are trying to raise some money to help purchase a used larger van with a lift.I love my mini-van and I'm a little nervous about driving a big one.
Todd is doing well, adjusting to 2nd grade. Boy, I feel old.10 more years and he will be graduating.
Love to all and keep the prayers coming, they really help.
Thursday, August 15, 2002 at 09:10 PM (CDT)
Dylan is doing well. He is getting ready to start school. He will be going into 1st grade at Weatherbee Elemetary. He is very excited because he finished kindergartn on homebound.His nurses will attend school with him everyday because of the ventilator and trach. His next MRI is going to be the first week of September. We are praying to see as much improvement as we saw in the last MRI. If we see improvement again we will start taking actions to try to wean Dylan off the ventilator. He tells me everyday, he wants to be a normal kid again. It just breaks my heart. Please keep us in your prayers, we know and believe that there is power in prayer. God Bless
Monday, June 10, 2002 at 04:15 PM (CDT)
Dylan just got his first Great MRI since he was diagnosed April 2000. Dylan has been taking a alternative medication since January 2002. The MRI showed considerable shrinkage. Please keep the prayers coming, they sure are working. We still have a long way to go.
Saturday, April 27, 2002 at 10:30 AM (CDT)
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