Follow up in New York

We headed back to New York yesterday for James' follow up appointment with Dr. Wisoff, thanks to Loice who got us to our appointment safely despite the turn that I suggested that landed us in Queens.

We did not see Dr. Wisoff, but just the nurse who removed the stitches (at least what she could since some of them were placed later during the shunt revision - hopefully those dissolve). The stitches weren't so easy to remove and the nurse wasn't so gentle, so it didn't go really well. I told James I'd take him to McDonalds afterwards for being so brave. But, McDonalds was a few blocks away and it started to rain. Of course, our umbrella was in the suitcase that we had conveniently dropped at the Ronald McDonald House. So, lunch ended up at the nearest restaurant that we could find - called Cristina's.


James trying to make the same face as the guy on the totem pole

We stayed at the Ronald McDonald House. James thought he'd spend some time in the playroom, but the energy level didn't last long. He did meet "Angel" in the lobby and he really liked that - he LOVES dogs.



We even got to meet up again with the family that we ate with at the cookout a few weeks ago. www.caringbridge.org/visit/ber I wanted to post his website because I went to it and saw what this poor little guy has to go through and my heart broke. Please keep him in your prayers.

Today, we head home!!!!!

The Liberty Bell

We went today with Bill, Loice, and Tori to the Liberty Bell and to ride the "Ducks." We had a WONDERFUL time. Here are some pictures of our day.


James and Tori with some "historical figures."


A lady teaches how they did weaving


Teaching how the wool was spun


James at the Liberty Bell


Independence Hall


James riding on the "Ducks"


Our guide for the tour was VERY funny. Loice and Tori were "quacking" up


Even James was a little "quacked"


These are upscale condos right at the Pier on the Delaware River

Thank you, Middletons, for taking the time to take us today!!!!!

Grace Independent Baptist Church

Today, we had the privilege of attending Grace Independent Baptist Church with Pastor Vanhoose and his family. What a blessing that was! Mrs. Ferguson came to pick us up in the morning with Mackenzie.



After the morning service, they had a wonderful meal at the church. James took our camera and went around acting like the "roving reporter."


Pastor Vanhoose, whose birthday is today. HAPPY BIRTHDAY!!!!!!!!!!!


Mrs. Vanhoose and Levi


Caleb Vanhoose, their oldest son.


Isaac Vanhoose


Andrew Vanhoose


Caleb and Levi - isn't he adorable?


We had a wonderful time visiting with the Schultzes - Joshua, Caleb, and Debbie Kenderdine's grandparents - at the dinner.


Noah - a friend that James met


The boys were having fun


Stephanie, a college student that we knew from Fairhaven


Stephanie's Dad


Stephanie's Mom

Traci brought us back to the hotel in the afternoon and James has been sleeping ever since. I hope he didn't overdo it. Tomorrow, if he is feeling well, we will try to get to the Liberty Bell before we leave on Tuesday.

Discharged

James was indeed discharged today - and we are glad. We are beginning to feel like we are on a cross-country hospital tour. James is feeling much better today. I could tell when he was starting to get irritated with a lot of things this morning. When he isn't feeling well, he really doesn't care. So, under these circumstances, crabby is good. His sodium is still only 130, but they felt it was safe to discharge him and just have him eat a high-sodium diet.

Loice helped us get back to the hotel, stop at the bank, and get some breakfast. She has been such a help. We are going to rest for today and hopefully get to church tomorrow.

We are at the same Extended Stay America Hotel in Horsham, PA and we are in room 218.

Up

Sodium is up to 130 at noon today. Let's pray for a morning discharge.

Sodium

James' sodium went from 120 to 127 yesterday, but then leveled off. It did not rise any higher overnight. I would guess that it needs to get around 135 before they will let us out. Thanks for all your prayers.

Much better today

Now that the pressure is relieved in James' head, he is doing MUCH better today. He is really back to where we were when discharged from NYU. He still has memory issues and slowed answers, but yesterday we were doing good to get him to talk at all. I am so thankful that Loice was with me through it all. I think it was her help and navigating that made the whole thing go so smoothly.

I checked out of our hotel this morning in anticipation of a longer hospital stay. If they should discharge us soon, we will check back in. Mrs. Ferguson, James' teacher in the 1st grade who moved out here last year, came and gave me a ride back to the hospital with her daughter Makenzie. THANK YOU, TRACI!!!



When I got back to the hospital, James had eaten and his sodium is now reported at 125 - so we are heading in the right direction. Tentatively, if things continue this way, they anticipate possibly getting out tomorrow. That would be nice so that we could still have a bit of a visit in Philadelphia. James doesn't want to leave without seeing the Liberty Bell.

Shunt is revised

James' shunt revision went well - took only 30 minutes. He is looking a little "shell shocked" right now, but is improving quickly. His sodium is still low, even after 5 sodium infusions so far. This is common for James - to have the sodium difficult to improve. My prayer is that it will correct by tomorrow and he will be able to be discharged. I'll let you know.

In the hospital again

James had a wonderful day yesterday. We went to Dr. Loice Swisher's house for the afternoon and James played bowling on the Wii, played outside with Loice's daughter, Tori, on the swingset, and cooked out for dinner. I'd say he watched Charlotte's Web also, but I think he only saw that from the inside of his eyelids. We really had a great time.





BUT, he woke this morning at 4:00 a.m. throwing up. I wondered if he had just over done yesterday and had planned to lay low today. But, he continued to throw up. I called Dr. Swisher who took us to Children's Hospital of Philadelphia (CHOP). By the time we arrived at the ER, he had thrown up 5 times. A CT scan showed that one of his ventricles is enlarged - meaning that the shunt is not working correctly. We knew that this was a possibility with his original resection of the tumor because of debris that would be left behind and could possibly block the shunt. He is now (2 pm) in surgery to clear the shunt. Normally, a patient would go home the next day after a shunt revision, but James' sodium was also too low (121, normal is around 140). So, it is probable that he will stay in longer.

We appreciate your prayers for James

Phone

I think I solved the phone problem. I apologize to those that tried to call and couldn't get through.

Philadelphia

James was indeed discharged today and we are now at the Extended Stay America hotel in Horsham, PA.



Juleen was there to check us in when we arrived. When she heard that James was coming from surgery, she dropped everything and got James into our room and resting before we had even finished checking in. She has checked on us and been there to help with anything we needed. She has really been a blessing!!!!

It feels good to be out of the hospital. James is doing VERY well. He handled the drive better than I thought he would. We are looking forward to a week of rest and visiting with a few friends.

The # here is 215-784-9045 and we are in room #239. We will be here until next Tuesday, the 24th, when we will return to NY for a follow up appointment with Dr. Wisoff. Then, prayerfully, we will be able to stay at the Ronald McDonald House that night because we fly out of LaGuardia on the 25th.

Thank you all who have prayed. We can tell.

Rehab/Dr. McNeilly/Father's Day

I can tell James is feeling a little better. Twice during the night, he managed to get out of bed by himself....WITHOUT PUTTING THE SIDERAILS DOWN, which are supposed to keep him in. He is getting around very well, but is still somewhat confused. So, getting up by himself is not such a good idea - it's hard to tell where we might find him.

The rehab nurse came to see him today. When she asked him where he was, he said a hospital in Illinois. When asked what he ate for lunch, he said that he had given it away (which is not true). BUT, when asked who called him today, he promptly said Dr. McNeilly - that was the right answer. I was surprised that he remembered, it had been several hours since the call. Thank you, Dr. McNeilly, for calling...you have made a difference.




He has asked me several times today when he will get out - so I think he's getting anxious. If all goes well, I believe it will be tomorrow.

James wishes he were home to tell Dad "Happy Father's Day." So, he thought he'd send a message with a picture.

A little clearer

James was up today a little bit more and for slightly longer lengths of time. For the first time, he is starting to put things together. Its almost as if he is just now picking up where he left off before surgery. He wanted to know where the boys were and when his surgery would be. He was very surprised to learn that the surgery was already over. Although a bit clearer, he still wears out very easily. We do appreciate your prayers for his recovery and for wisdom regarding future treatment.

Veggie Tales did it

James has slept the entire day. He did not open his eyes for Dr. Wisoff. He did not even open his eyes while he ate breakfast and lunch. So, when I went out, I stopped at Borders and looked for some things to engage him. One of them was a Veggie Tales movie. He is now wide awake....watching Moe and the Big Exit. You have to admit, if you saw vegetables singing - you'd be wide-eyed too.

A thanks to Martha for getting James started on Veggie Tales.

Slow progress

James is still sleeping a lot, but seems a little less confused today. I talked to Dr. Wisoff yesterday and he explained that each week James will improve, but within that week we will have ups and downs. He warned us not to try to compare it day to day, but to use 3-4 day blocks to compare. James' answers today are still not always accurate, but they are not quite as "outrageous" as they were before. I knew that he was doing somewhat better when I asked him what his favorite drink was. He said, "MD." That's my boy!!!!! Unfortunately, when the endocrinologist came to see him the first day, she took one look at his Mountain Dew and said, "Get rid of the sugared soda." She worries that he will put on too much weight with the steroids. So, we have tried to do better. Dr. Wisoff says that, barring any unexpected complications, James will be discharged Monday. We thank you again for all your prayers. We do not take that lightly. Over the last ten years, we have watched James defy many odds and we know that it is nothing short of answered prayer.

TRULY, GOD IS GOOD!!

I met Mindy Blumenfeld on the Pediatric Brain Tumor forum. Her son has been treated for an ependymoma. She lives near New York and has been here to visit us twice now. Through a foundation that they started in their son's name, she has helped us financially. Today, she has offered to come sit with James for a few hours so I can take a break. Because of his confusion, he really cannot be left for too long. THANK YOU, MINDY! You have helped more than you can know.

I heard there's a McDonalds a few blocks away - I think I'll walk there when she comes.

WRONG NUMBER

Before everyone calls and drives my roommate crazy, I gave the wrong number. The number is 212-263-1950.

Day 3 - Pink purse

James is doing very well. So far, he has no endocrine issues that need corrected. All his vital signs are fine and all his labs are perfect. He is just very confused and has terrible memory (maybe he inherited that, though). Today, the neurosurgical resident came to check on him. He asked him to remember three things - cat, apple, and pencil. About five minutes later when he asked James to repeat them, James named three totally different and unrelated things. But, the most interesting one was the last one - pink purse.



Any that knows James knows that James would have nothing to do with pink or a purse. He is also not remembering what all the lines and wires are for - not even the IV tubing. So, he is constantly trying to take everything off. This makes him high maintenance right now - like trying to care for an octopus. Some of the problem could be coming from the steroids that he is on, but most of it is because of the swelling in the brain. I am told that it could take anywhere from a few weeks to a few months for it all to clear. So, that would be our biggest prayer request - that the swelling will clear and James will have no permanent damage.

They have moved him to a regular room. Our number is 212-263-1950, but I can also use the cell phone in this room. Dr. Allen said he did not see any reason that we shouldn't be discharge by Monday, he really doesn't have any major issues right now, just memory. But, he is not the one to discharge, Dr. Wisoff will.

Thank you again for all that have prayed and supported us.

Day 2 - 70%

James is awake a bit more today, but quite confused....some of it kind of funny. When the nurse came today to take out his Foley catheter, he asked her what he owed her. She said nothing, but he insisted that surely he owed her something. She said, "No, today Foley removal is free." When I left for a few minutes, I came back and James handed me his IV tubing - which he had unscrewed from his catheter. I asked him why he did that and he said, "You told me to....right before you left, I asked if I could take it off and you said to just be careful." Of course, that conversation never happened. If you know James, you know that he is very used to IV tubing and usually knows not to take it off. Just an example of his confusion.

Otherwise, he is following commands and eating well. In fact, I think he ate more for supper than he usually does...probably from the steroids. They did another MRI today which showed that 70% of the tumor was removed. Dr. Wisoff is very happy with how the surgery went and how James is doing now.

Thank you for all your prayers...they really mean a lot. I huge thanks to the wonderful ladies that I work with at St. James for all their help and support and donations - and Barb for keeping Cocoa (who Josh is missing very much). Pray for his continued recovery and for the next steps for him in treatment.

Surgery

Everyone finally got here Monday night - Dave, the boys, and Aunt Laura



We celebrated Johannah's birthday early and then Aunt Laura and I took her to the top of the Empire State Building.



James had to be at the hospital yesterday at 6:30 a.m. Surgery started at around 11:00 a.m. after an MRI that mapped out the brain (the reason for the little circles on his head). The surgery went very well. The surgeons thinks he got about 60-80% out, but won't know for sure until an MRI done today. James woke some just after surgery, but pretty much slept the rest of the night. The next 72 hours are the most important in terms of determining what damage has been done to the hypothalamus and what complications he may have because of it.






We really appreciated all those that called, wrote, or sent a card. If I did not return your call yet, I apologize. It was a hectic day. I will call.

Another headache

We went to church this moring at Heritage Baptist Church here in New York. The people were very, very kind and even sang Happy Birthday to Johannah, who will be 13 on Wednesday. But halfway through church James came to me from his class and said his head hurt so bad and he was seeing double. So, we left and caught a cab back to the Ronald McDonald House. After some Tylenol and a nap, he is feeling better now. I'm not sure where these headaches are coming from. This is the third in the last week. Maybe it is tumor related, maybe it is an underlying infection that we don't know about (although his blood work this last week should show it), maybe its the heat (it was 95 today), or maybe he is having anxiety about the upcoming surgery. We'll pray that if there is a problem it will be found or if it is anxiety that the Lord will comfort him and give him a peace. We do appreciate your prayers also.

Our family will be traveling here today and tomorrow. Please pray for their safety.

Free Days

We had no appointments on Friday, so we decided to attempt the subway and go to the Statue of Liberty.





Because of the incredibly long wait, we put the Statue off until Saturday and walked part of the Brooklyn Bridge on the way back to the RMH.





Johannah had a rough night with a grand mal seizure Friday afternoon and again Saturday morning at 4:30. Nonetheless, she decided she still wanted to head to the Statue of Liberty today, so we did. She was glad. By the time we got to Liberty Island, she was feeling a bit better and really enjoyed herself - though tired.

First, we took the ferry over to Liberty Island...but during the wait, we met a few "entertainers." The one with the clown hair sang a song about James.







We toured Liberty Island with some headphones that gave all the history of the island and the statue. It was VERY interesting.




Then, we toured Ellis Island, the historic immigrant island where all immigrants were brought years ago before they were allowed into America. There were some amazing stories there.



We headed back to the RMH afterwards as quickly as possible. The temperature at that time was 85 degrees and is supposed to get to 94. I think we'll stay inside the rest of the day.

Our family will begin travelling here tomorrow and Monday. Please pray for their safety and, of course, for James' surgery on Tuesday.