Javon's Wish for a Disney Cruise granted

[Nightowl78]

Hello all. I recently found this site and think that it is wonderful! I have gotten lots of ideas and hints from all the great folks on here. Thanks a bunch!

First I would like to start off by introducing all of the players in my story:

There's me: Dear ol' Mom . Single mom, juggling a full time job on the side.

DD: (Tamia) Mia 13yrs

DS: Rajan (Ray) 11yrs

DS: Javon (Vonnie, Von) Wish Kid 9yrs

This past August I found myself at home, alone, and wondering what I could do to lift the spirits of my 9yr old son. I had recieved a phone call from the school counselor that morning. She said that a lot of teachers and the vice principal had come to her and expressed some worry that they had noticed a shift in demeanor of Javon altogether. (Up until December of 2008, he was the happiest, friendliest child you could ever wish to meet. Always had a smile on his face.) They all said that he never smiles anymore. After our conversation had ended, I found myself in tears. I then picked up the phone and contacted the Make a Wish foundation. (I had been debating doing this for several months, but thought that Javon's situation may not be quite serious enough for the organization to even consider.) MAW took our application verbally over the phone and said that they would send the paperwork to Javon's doctors and would contact me back if he was approved for a wish.

Two weeks had passed and I received a call from MAW and said that they had approved his WISH. I was soooo ecstatic and couldn't wait to share the news with the kids...... Then we all sat down and explored all of the possibilities for his WISH. He decided he wanted to go on a Disney cruise.

With the wonderful news of his WISH and regular counseling sessions, Javon has been happier and more upbeat these days. Thanks to MAW!!

 

[Nightowl78]

did not mean to put frown next to DD: Tamia, should have been a smile......oops

 

[Nightowl78]

May 2008, Javon had a headache that lasted for 2 days. It wasn't instense, or horribly painful for him, yet I was worried and decided to take him to the ER just to be on the safe side. They said that he just had a migraine, gave him some Tylenol and sent him home. No more headaches for several weeks.

Several weeks later, he had been outside playing and swimming in the sun all day long, later when it was time for bed, he complained of a headache, I thought nothing of it, so I gave him some Tylenol. He went to sleep and woke up fine and ready to go the next morning. The rest of the summer went on with a small headache here and there. Nothing consistent.

October arrived and I took him in for his yearly check up and expressed my concern to his pediatrician and she said that he may just be prone to migraines, and gave me a list of foods to avoid that trigger migraines. Throughout the remainder of the month things were fine.

Then November rolls around and he began getting more and more severe headaches. He would sleep them off and wake up fine. Until Thanksgiving. My Aunt and Uncle travelled to Omaha to spend the holiday with us and we all went out to eat. Javon had a slight headache and upset stomach, (I thought for sure it was the flu.) He ended up throwing up and we had to forego our after dinner plans to attend the downtown Christmas lighting ceremony.

Aunt Linda and Uncle Eddie went home and things were ok for a couple of weeks.....until December 8th. I got off of work that awful Monday morning, and Javon had not been sent off to school by his father like usual. He was home, miserable, in soooo much pain that he couldn't lift his own body off of the ground. Something tugged at my mind and told me that this was NOT a migraine causing my baby to be this way. I loaded him up and rushed him to the doctor. I did not want to go back to the ER. I wanted to take him to see his pediatrician that had been caring from him since the day he was born. I expressed my concern that this could not be another migraine. He woke up with this pain, in fact while in the waiting room, he vomited all over the floor. People in the waiting room avoided us as if we had the plague.

Dr. Rupp agreed with me and said that she wanted him to go over to Children's Hospital immediately to have a CT done. I called Dad and told him what was going on, and he said he'd meet us there. It felt like hours sitting the Radiology waiting room. My mind began wandering, worrying. Then I am told by the receptionist that Dr. Rupp was on the phone and wanted to speak with me. I was taken to a small phone booth type room and told just to pick the phone up when it rang. I did, and I was told immediately to sit down. My heart just dropped into my stomach. I knew immediately and didn't have to be told anymore. I thought, "how do I handle this news with Javon sitting right there?" "How do I not breakdown and cry?" Dad had not yet made it to Children's, so it was just me and Javon, and my faltering strength, about to give way at any moment.

I was told that Javon had a mass sitting at his brain stem. They would need to do a MRI to find out more information about the mass. He was admitted to Children's that morning. For the rest of the morning and afternoon I played the waiting game for more information. I had no clue what to expect. I had no clue what to tell my son.

Later that evening Dr. Puccioni came to see us. He told us that Javon's tumor was called a Craniopharyngioma tumor. Not only was it a tumor, but it was also accompanied by a cyst. This entire tumor was attached to his right coratid artery, right optic nerve, hypothalamus, and pituitary gland. He explained that resecting this tumor could result in quite a bit of damage, but the silver lining is that the tumor is benign. Thank goodness for that. Javon was kept in the hospital and released the next morning. Surgery was scheduled for Thursday, December 11th. We had one day to prepare Javon for this surgery. He was terrified. He said he was afraid he would not remember us when he woke up from surgery. Deep inside I was terrified too, but that is the only place I was able to be terrified. I had to put on a strong front for the sake of Von, Mia, and Ray.

Uncle Ed loaded up his truck and drove from Ohio on Wednesday, December 10th. He pledged to stay in Omaha to help us as long as we needed him to. (He just retired that summer.) Aunt Linda arrived a week later as she could not get off of work until then. (I don't know what I would do without them.)

Thursday morning came and nobody could talk, we were all quiet. I sent Mia and Ray to school. I wanted them to have a normal as possible day at school. I didn't want them to worry, they needed to have something to distract them. We checked in at Children's. Javon played video games while they inserted his IV's and prepped him for surgery. They wheeled him back and he was smiling and laughing from the meds they had given him to relax. I was thankful for that, had he been scared or crying, I may not have let them take him.

Then we waited. We waited 7 1/2 hours. It was the longest 7 1/2 hours I ever lived through. The recovery nurse came and got me. I asked her what I should expect. I told her I needed to know so that I wouldn't scare Von once I saw him. We took the freight elevator up to ICU, and she explained everything to me. Yet once I arrived in his room and I saw him, the floodgates finally broke, and so did I. After being so strong the past couple of days, I could not do it anymore. Dad told me that I should go home and take a shower, and a nap and come back once I had calmed down, he would be there for Javon until I came back.

Javon had a tube draining the surgical site, and a tube to allow the build-up of CSF (cerebral spinal fluid) to drain. Of course there were IV's everywhere. The incision was pretty big and there was plenty of swelling to boot. Javon spent a couple weeks in the hospital. Things went really well and he was released for Christmas. YAY!!

At this point things are far from over.....but I will have to continue on later.

 

[Mtopher4]

I know all about scars and CSF.. and Migraines for myself Can't wait to read more and glad he got his cruise wish

 

[Nightowl78]

OK things around here are a little slow and I have some time to add to this PTR!!

After Javon was released from the hospital and we had 2 weeks before he started radiation. Radiation lasted for 6 weeks. We went 5 days a week. Once Radiation ended, things calmed down and we were able to start a normal schedule again. Javon went back to school fulltime.

He still has a portion of his tumor left and will need MRIs to monitor it for the rest of his life. Recently we recieved news from his radiation oncologist that we don't have to have the MRIs every 3 months anymore!!! Just every 6 months now!!! That was such awesome news. (Javon hates the MRIs b/c of the IV.)

In addition to the regular MRIs, his hypothalamus was damaged causing some behavioral and emotional issues. He has hypopituitaryism and needs cortisol every 8 hrs, and emergency injections for severe illness/injury, (this freaked me out this past November as he broke his arm while wrestling w/ Ray). He also is extremely deficient in growth hormone, so he has to have injections every night. I recently ran into a situation where he was invited to spend the night at a friend's house. He was unable to go b/c of the meds and injections. I felt awful and cried for him. I told him that we would have a BIG sleepover at our house, and that made him happy! He went to the party for a couple hours and came home in time for his meds.

So now that you know a little about our story...I can get back to our PTR!!!

So Javon's wish was granted and we had to get our Passports before they would start the planning! This extended our wait time by 4 weeks!!!!! After the Passports came, it seemed like 4-ever before we heard anymore news . Then after being soooo patient, we got our dates! April 18-April 22nd, but no specifics were given. So, I went to the DCL website and figured out some more details on my own. We would be on the 4 night Bahamian cruise on the Wonder!

Then it was another waiting game. UNTIL this past Friday!!!! I got word that we would fly out of Omaha the day before our cruise (Apr. 17th). They will pick us up via LIMO, and on April 9th, Javon will be thrown a party at the Amazing Pizza Machine in celebration of his WISH.

I decided that I will keep this info quiet so that the kids will be soooo surprised.

I have purchased summer clothes and swimsuits in advance for the kids and myself, and I have some loose ends to tie up on things to pack and will get them all together these next 26 days!

I am a little worried as we will fly Southwest. I am a bigger woman, so the news about Kevin Smith being forced to purchase a second ticket alarms me somewhat. I wonder if I should bring this up to my Wish Grantor???!!!

 

[cantwaittoseemickey]

Welcome! I am following along on your ptr for Javon's wish trip

 

[Momofwishkid]

Hi Carrie! I am so glad you picked up that phone and made the call to Make A Wish for Jevon. Has the news helped brighten his days a little. My son Gavin just went on his Wish trip. He has multiple cranial hemangioma tumors so I can relate to alot of your story.

 

[tinytreasures]

glad he is going to get his wish I can't wait to hear all about it

 

[cmp1111]

Wow. I'm so glad he got his Wish.

I fixed the frown face by Mia in your first post.

Thanks for sharing!

 

[wish_upon_a_star35]

Yay!!!! I am very happy that Jevon got his wish!!! I am really looking forward to reading all about it and seeing lots of pictures of his smiling face!

 

[lindsayp]

Subbing! Thanks for sharing...I'm sorry Javon's had to go through so much already in his young life. Both my sister and cousin have had and have different health problems that also involved serious neuro surgery when they were babies and treatment for my cousin throughout her life. So although I will never say "I know how you feel", I want you to know I can really sympathize with your family's situation and my heart goes out to you!

I'm so happy he's getting a Wish trip! I've always wanted to go on a Disney cruise...I'm sure it's going to be so awesome! My cousin did a Wish trip to Disney and they had an amazing time!

 

[Nightowl78]

I know all about scars and CSF.. and Migraines for myself Can't wait to read more and glad he got his cruise wish

Thank you Lisa! I have been reading about Apert thanks to your link!

 

[Nightowl78]

Welcome! I am following along on your ptr for Javon's wish trip

Thank you Tonya! Sierra and Ty are cuties! Where abouts in Ohio are you from? I hail from Toledo....(all of my family are still there!)

 

[Nightowl78]

Hi Carrie! I am so glad you picked up that phone and made the call to Make A Wish for Jevon. Has the news helped brighten his days a little. My son Gavin just went on his Wish trip. He has multiple cranial hemangioma tumors so I can relate to alot of your story.

Jennifer, the news has made a world of difference for him. I don't have to DRAG him to appts anymore!!

 

[Nightowl78]

glad he is going to get his wish I can't wait to hear all about it

Thank you

 

[Nightowl78]

Wow. I'm so glad he got his Wish.

I fixed the frown face by Mia in your first post.

Thanks for sharing!

Thanks a bunch for fixing that....I am still learning!

 

[Nightowl78]

Yay!!!! I am very happy that Jevon got his wish!!! I am really looking forward to reading all about it and seeing lots of pictures of his smiling face!

I will definitely post some pictures of us all as soon as I figure out how!!! Thanks for finding us

 

[Nightowl78]

Subbing! Thanks for sharing...I'm sorry Javon's had to go through so much already in his young life. Both my sister and cousin have had and have different health problems that also involved serious neuro surgery when they were babies and treatment for my cousin throughout her life. So although I will never say "I know how you feel", I want you to know I can really sympathize with your family's situation and my heart goes out to you!

I'm so happy he's getting a Wish trip! I've always wanted to go on a Disney cruise...I'm sure it's going to be so awesome! My cousin did a Wish trip to Disney and they had an amazing time!

I appreciate that more than you can know! I am so greatful for everything that MAW has done for us, that the trip itself is just the icing on the cake!!! I am also elated at all of the warmth I am experiencing from all of the folks here on the DISboards!

 

[Jess6001]

I appreciate that more than you can know! I am so greatful for everything that MAW has done for us, that the trip itself is just the icing on the cake!!! I am also elated at all of the warmth I am experiencing from all of the folks here on the DISboards!

Yeah, I know there are so many great people on the boards! It's a great place to share your feelings...people are always so supportive/excited/happy for you! (BTW, I accidentally wrote a post under my sister's name, "lindsayp," so actually it's me "Jess6001" who's subbing lol...just fyi if you see me post again!)

 

[Nightowl78]

Yeah, I know there are so many great people on the boards! It's a great place to share your feelings...people are always so supportive/excited/happy for you! (BTW, I accidentally wrote a post under my sister's name, "lindsayp," so actually it's me "Jess6001" who's subbing lol...just fyi if you see me post again!)

I look forward to hearing from you in the Future Jess!