Tuesday, April 29, 2008

The New Hockey Star To Be!!!!

Joshua has decided to follow in his cousin's footsteps and play hockey. Hopefully we will be able to sign him up this week. We celebrated his 6th birthday on Saturday and he got all kinds of hockey stuff. He was so excited. Of course, he insisted his teacher from Tennessee has to have the picture of him in all his gear.

Saturday, April 26, 2008

Learning to hear God's voice...
Thank you all who prayed for us this past week. God used you through your comments, prayers, and friendship to bring encouragement through a really rough week. I am happy to share with you that we made it through today without one dizzy episode or any other major issue. I am thanking God for the break today.

After my post the other night I sat at the computer just praying and trying to figure out what could be going on. I felt like the Lord answered our prayers and revealed to me a conection between the episodes and Jon's meds. It seemed to happen within 30 minutes of giving him his meds. So I looked up his seizure meds and sure enough these symptoms of vertigo, nausea, jumping eyes, inability to walk and the clumsy movements after an episode all show up as a side effect of lamictal "overdose."

So Friday morning I waited to give Jon his meds until we got to clinic. We tried first to give just the lithium to see if there was any reaction. There wasn't. So I gave him the rest of the meds- lamictal etc. Thirty minutes later his eyes started jumping around. Within minutes he was not able to walk. The world was spinning. This could not have happened at a better time. The dr. got to see what was happening and then we ran to the EEG and got him hooked up while it was still happening. The EEG showed no seizure activity which was good in the sense that we were not seeing a seizure but left some questions as to what was going on.

The neurologist that was on call at the time came in with two others in his practice. This part unfortunately felt like a waste of time and left us all wondering what the deal is. Even the nurse practioner agreed that they didn't tell us anything we didn't really know. I think they got caught up in the large amount of medicine that Jon takes and forgot to look at the whole picture. While they didn't agree that lamictal could become toxic over time...(they didn't even know that diziness could be a side effect of lamictal) they did agree that we should cut the dose in half.

I left feeling kind of sad, overwhelmed, and not sure I had the energy to plug on and get things set up for help here in town. There is so much paperwork I need to do. So much I need to get organized. I felt so frustrated with these neuro doctors.

Anyway, Shawn and I needed to go get presents for Josh's birthday so Shawn's parents kept the kids for us and we went out for dinner and to shop when we got back from denver. It was a great break but did little to prepare us for the storm that hit after we got home. Jonathan went into a full blown rage/psychotic episode that lasted 45 minutes. I held him to keep him from hurting himself. Shawn switched with me after a while. Jon screamed horrific things, bit, scratched, punched, spit, and blew snot all over us. We were all crying..the other kids were scared and crying. I tried to rock him and comfort him and at the same time I felt my heart being torn to shreds. In this moments the pain that overcomes me is so awful...so helpless.

It has been so long since an episode like this has happened. That in itself scares me. After it is over he cries with such a sorrow that just breaks my heart. He doesn't want to scare the others. he doesn't want to hurt anyone. He feels so bad.

Please continue to pray for us. Please pray for Jon to be able to deal with the sadness he feels over moving. Please pray for whatever is going on the stabilize. Please pray especially that we will find the professionals we need for him here close to our home.

Thank you all for being friends and for caring for our family.

We love you all!
Just a quick update...so I don 't leave you all hanging any longer...
Jon is home and he is ok for the moment. He has had a much better day today. His EEG did not show any seizure activity. I will go into detail tonight. Josh is having his birthday party at the skating rink in 30 minutes so I need to run get ready.
Thanks for praying!

Thursday, April 24, 2008

I Just Don't Know....
Tonight I am missing the carefree day that this picture was taken. This is Jon with his best clinic friend Sydney. They were spending their last day together during Jon's going away party at clinic.
I just don't know what is wrong with my Jon. He is so not right. He has had four episodes of dizzy/spinning/ and jumping eyes and not being able to walk today. It took everything in me not to pick up the phone and call the dr. I am about to have him admitted. I just don't know what it wrong. In the past this has happened in just isolated incidents. Not repeatedly over and over. This afternoon when it started he cried "mommy, call the doctor, call the doctor, take me to the doctor."
What do I do? I am just holding my breath until Friday. He has an EEG Friday afternoon... I am hopeful that this will be an answer. But I am not sure it will be. Please pray for wisdom. Please pray for us to understand what is going on. Pray for Jon's protection. I am so worried that he is going to fall and get seriously hurt. I am going to try to find my copy of his scans that were done in Atlanta...maybe this will help the dr to know what is going on. I don't know.

Wednesday, April 23, 2008

Update on Jonathan:

I want to say first how incredibly blessed we are to be here. God knows every need and he provides beyond our greatest imagination. We have a had wonderful care for the past year in Knoxville. I was so blessed and humbled by the way each nurse and doctor welcomed us back and cared for Jon. My heart was softened...and it was a little scary to leave the familiar and the people who knew Jon's history.

My fears have been relieved by this new set of doctors. I am so impressed by how much they seem to know about my child. Yesterday we saw a nurse practioner. Not only was she in contact with Jon's doctor but before we even arrived they had already discussed what was going on and had a plan. They believe that the chemo has built up in his system and has now become toxic. They said it is incredible that he has made it this long without more problems. We made it 50 out of 52 weeks on this regimen. So the plan is to stop the chemo completely and see if the symptoms subside. There is some question as to whether his MRI done last week is stable or not...we are waiting on the scans to come from Atlanta so that we can have a comparison.

After this past treatment, Jon was having a harder time recovering. He was gray for the past 4 days-really no color in his face. He was very nauseated and worn out. Then yesterday he all of a sudden became very dizzy and could not walk. He said his eyes were spinning in circles and he was seeing double. This went on for about 30 minutes. Half way to Denver he snapped out of it and was ok. It was very weird. He was ok for most of the tiem we were there. On our way out of the hospital we stopped in the cafe for coffee. While we were in line he all of sudden cried out, lunged forward (thank God we were holding on to him), and had the look of terror on his face. He started crying that he was so dizzy and his eyes were spinning. Literally his eyes were bulging and spinning in circles. He could not walk. We got him to a bench and I held him while Shawn ran back up to the clinic to get a nurse. Jon kept crying "its worser, its worser its a ten. I am so scared." It was quite freaky. The nurse came down and we took him back up to the clinic. They gave him atavan to stop the seizure. A few minutes later he snapped back out of it. This was so weird.
The thought is that the chemo has made him more likely to have a seizure. They increased his seizure meds and have requested an urgent EEG to be done. If it continues to happen then we will go back to Denver and they will admit him and get it under control. So far this morning he seems to be ok.
Thank you friends for your prayers. It is so comforting to know that there are so many of you out there praying for us.

Tuesday, April 22, 2008

We are on our way to Denver with Jon. He is having symptoms that appear to be related to a seizure. Please pray for him. Will update later.

Friday, April 18, 2008

Since we have just now returned to the 21st Century, the computer is in high demand so this will be brief. I just wanted you to all know that I am back online! You can reach me at either my juno email or my comcast email. You also can still call us at our Knoxville number... we are keeping the knoxville number for a while.
More later on tonight!!!!

Wednesday, April 16, 2008

Missing in Action?????

Sorry friends...I have been disconnected. Its quite unnerving for an internet crazy girl like me. It looks like I will remain without a connection for another few days. My darling husband has been thrust full force into a crazy work schedule so we have had no luck setting up cable and phone. Already my cell phone is out of minutes! Hopefully, Shawn will emerge from the insanity and can set up all the details for the things we need. I am not complaining...at this point I am just happy to have electricity.

I have to tell you that I absolutely love my house. I am almost unpacked...well the majority of the main living areas are. Its so nice. Mya got a little sunburn yesterday from playing outside..she loves being able to go out with me having to be with her. As soon as I get connected again I will send pics.

Just a quick update and prayer request....Jon has a long day scheduled tomorrow in Denver. They are calling for snow tonight so hopefully we will not have weather issues. We have our first appt at 8:30 for a liver study. then chemo. then an mri and then back to clinic for the mri results. I am curious to see the status of this tumor...my little guy has been having a few issues again but I am sure its just mommy nerves that are making me worried.
Well, I better run and get home...in the quest for an internet connection it has been a journey- first a quick run through the chick fil a drive thru after Jon proceeded to throw up. Unfortunately we only had a cardboard shoebox for his use...just imagine that one. A great Target commercial for sure- Brittney looked at me and looked around the parking lot. A second later she proclaimed Oh good Mom! There is a Target so you can buy a new shirt!

Until next time...hopefully sooner than later!

Friday, April 11, 2008

Today's The Big Day!!!!

In a few short hours we will be closing on our new house. We are so excited. I think that I may be staying the night there so I can get things unpacked. Shawn has to go to a Sky Sox game and dinner tomorrow night for work so I think it will be good to have the time to get organized without the kids.

Yesterday we went to Denver for chemo and the multi-discipline clinic. There was a bad spring snow storm in the morning. Thankfully Shawn had decided to go with me and I didn't have to drive in it. We made it the hospital an hour late. This hospital is just WOW!!! It is an incredible facility. People are so friendly. They have free valet parking for patients. This is so wild... you can get out right in front of the hospital. When you come back out, they get your car, open the doors for you, help load your stuff, and then they wait for you to get in and they shut the door for you! It is so crazy!!!

Since we were an hour late I was worried about whether we could get everything done in time for the appts. This hospital is also one of the most efficient places I have ever been too. We checked in, went to radiology for a bone age x ray, checked in at clinic, saw the dr., accessed Jon's port, administered zofran and chemo all in one hour!!! If you are not a hospital veteran you might not appreciate this as much...but generally we wait an hour for each of these things to be done individually. Typically, a clinic visit for chemo and blood work last 3 hours...so we are so shocked to not be there longer than an hour.

Yesterday was a little different though. After chemo we went to lunch and then went back to the clinic to see all the doctors that are part of the neuro oncology team. One of the most stressful things for me in managing Jon's care is having to present his medical history over and over again. These drs had already gotten info from our oncologist in Knoxville and Atlanta. They had already all discussed Jonathan's case. What a relief to not have to bring all the drs together myself. So over the course of 4 hours we saw an endocrinologist, neuropsychologist, social work, dietician, nuerosurgeon, rehab doctor, and a neuro opthamaolgist. All I can say is WOW!!! more was accomplished in those 4 hours than has been in the past. I still can't digest it all. The greatest change is that Jon will get glasses. His vision is not good in his right eye and glasses will help protect his left eye from injury. The rehab dr. ordered physical therapy and occupational therapy. She said that there are wonderful therapists in Colorado Springs. Also, they have recommended getting Jon set up with special olympics and other special needs recreational activities. The endocrine dr. gave us a prescription for emergency cortef shots in the event of severe vomiting or other emergency. Not sure why he was not given this before. Social work gave us the name of an agency here in town that provides assistance. The neurosurgeon was wonderful...made us feel very comfortable about being able to call him should any shunt issues arise. All I can say is that I can see the hand of God all over this move!!!!

Well, I better get the kiddos dressed and ready for the day. Shawn should be finished with work in 3 hours and the excitement begins. Thank you all for your continued prayers. Oh- I almost forgot the most exciting news! We only have two more chemo treatments left!!!!!!

Monday, April 07, 2008

Good Morning from Colorado Springs. I have been resisting blogging since we have arrived. I think I feel a little disconnected from the real world! My email acct was deactivated and that has really messed me up.Its funny how reliant we are on things like that. It has been good for me though...not checking my email every 10 minutes...kind of feels like vacation.

We have been staying with one of my best friends since we got here. This has been so good for me. I have really forgotten what it was like to have a friend to just live daily life with. Although it has been crazy at times and even a little stressful, it just feels right. Shawn's mom and dad kept Josh for the first 2 nights. Jason stayed with his cousin for the night. It was a very nice break!

After our flight out here being delayed and then canceled, we were finally rerouted on a different airline on a direct flight to Denver. We arrived here around 9pm thursday. Shawn left Friday afternoon and ended up with a delayed flight in Texas. He finally made it home around 12:30 Saturday morning. He got up a few hours later packed the house and loaded the truck with friends. They were able to leave a day early so they are almost here!!!! They should be here by dinner time.

I am very happy that they will be here soon...my boys are really missing their daddy. Jon has cried every night. He has thrown a lovely fit. I know it is because he misses his daddy. Its been a while since he has been gone this long.

True to our past experiences, sickness has hit. Josh has had a fever for the past day. My friend's little girl has a fever too. I am hoping it goes no further and no one else gets it. But I guess I better get busy finding a doctor!

Well, that's just a little update...we are all here and alive! Really we are just having a good time playing with new friends and living in this unreal sense of belonging. It feels good to know that you are in the center of God's will.

Saturday, April 05, 2008

Just a quick note....if you have tried to email me at me comcast.net address please resend your email to sstock1211@juno.com. My comcast email is inactive and I can not access it at all.
More later...

Tuesday, April 01, 2008

We are packing up and moving out! When I have time I will update more. I just wanted everyone to know that I will be without internet service until Thursday evening. So if you have emailed me...I will answer, eventually.
Your prayers are appreciated for all the details. We leave Thursday morning-Please pray especially for Jon to be well this time.
Its hard to believe that the next time I blog I will be in my new home!