Thursday, March 8, 2007 - Day +299

Wow, can you belive it, Day 300 is tomorrow. Only 65 more days to a year out of transplant and what a year this has been. The last 3 weeks have been crazy so it's been difficult for me to sit down and gather all the information to blog it without boring everyone, so here it goes...

Ok, since the last blog, Jack's counts have been steady holding on except for his platelets. There is still some uncertainy to why he isn't making more of them, but the focus of everything is the GVHD which seems to be the reason for alot. Jack's gut issues are slightly better so we are thankful, but we are a long way off from ALL better.

Last Tuesday at clinic Jack's belly was so big that the doctors were very concerned. Dr. Bunin had decided that Jack should have an ultrasound of his belly to see what and how much fluid there is causing this belly distention. An appointment was made for friday, however GI came down and took one look at Jack's belly and said they wanted us to move the appointment to Thursday for the ultrasound and if necessary they would do a parasenthesis (not sure of spelling) on Friday which is basically taking a needle and asperating the fluid from Jack's belly. That meant that we would need to say Thursday night at the Ronald McDonald House to be back at the hospital for Friday morning and then stay the night in the hospital for observation and make sure infection doesn't set in or bleeding since his platelet level his been so low. Well, to everyone's surprise when we got to clinic Thursday, after Jack being the bravest, best boy in the world for not eating or drinking anything from 7:00 in the morning, they saw that his belly distention had gone down significantly. He had gotten a good dose of Lasix to help him expell the fluid on Tuesday and his belly had gone down. However, we were still moving on with the ultrasound just to make sure. The GI fellow, Dr. Franciosi, came with us to the scan and was so surprised to see how little fluid was in his belly and all his organs, liver, spleen, stomach, looked great with very, very little fluid surrounding them. Thank you God! So we didn't have to stay the night, but now what? What is making Jack's belly so big? It was decided that Jack would get another test called a Lymphosytigraphy (ok, now I know I spelled that wrong). This test would be injecting dye and watching it travel up into his body to see how his lymph vessels are working and see if there is a possiblity that he has leaky vessels around his gut causing the distention, maybe?!

So, this past Tuesday we went to get this test. The neuclear medicine doctor injected a very small amount of radioactive dye in between Jack's toes and we had to come back 4 hours later to see how the dye was traveling. Unfortunately with all the edema that Jack still has in his feet, the dye was not moving very fast at all. Now, it doesn't take a rocket scientist to see that Jack obviously has lymphatic issues but it would have been nice to know exactly what was happening with his lymph vessels. They made us come back another 2 hours later and again, unfortunately there was still very little dye moving through his feet. The neuclear medicine doctor wanted us to come back again on Wednesday, but Roy and I hadn't made any plans to be able to do that and there was nothing that said the dye would even continue to travel, so we opted to not continue the test. At this point this is something that wouldn't change his course of treatment only something that may add another piece to the puzzle with Jack's GI issues.

We go back to clinic on Monday because they were able to get us an appointment with an orthopedic doctor to check what going on with Jack's back. He is still unable to walk and can't bear any weight on his legs when he tries to stand. It's very heartbreaking to see him in that kind of pain. Roy is working very hard with Jack. They have a nightly routine which involves, stretching and bending and one accomplishment is that Jack is able to crawl short distances and we even got him hold onto the edge of the laundry basket and pull himself up to a kneeling position. He was in some pain, but he did it. He is such a fighter, as with all the NEMO boys. Hopefully on Monday we will get an idea of what's happening and I'm sure an MRI will be next. Please pray that it's easy to fix.

On a fun note, we got the ok from Dr. Bunin for Jack to start school. He is sooooooooo excited and even if he can't walk he wants to go. We had to get a letter stating that Jack can go back and now we are waiting for an IEP metting and then he should be good to go. We also got our invitaion to go to Kindergarden Orientation for next week. Jack falls under the "no child left behind" law, so guess what, my boy is going to Kindergarden in September. I can't believe it!!! Time sure flys when your having fun???

Kelly Dunbar, thank you so much for always commenting in the guestbook and I don't want you to think I have forgotten about you, Thank you for the CD it's beautiful. I'm having difficulites with my comcast email's again........We're thinking of you, too!!!

We are praying that the next 65 days will start to make changes for Jack's recovery from the transplant, that year mark will be something to celebrate!! As always, thank you all for always keeping us in your thoughts and prayers. God Bless.

Our great pharmacist, Ankur, gave Jack this huge Mickey Mouse and had this picture made by a friend who is an artist for Disney. Thank you Ankur!!!!!!