December 5, 2007
My gosh.....I haven't updated since January of this year. I am not sure what happened, I guess I was hoping in the back of my mind that my next update would be one that celebrated the day when Jake was done his ACTH and OMS free. I appoligize to all who have been looking for this update for far too long!!
Well how do I summarize all that has happened since Jan 2007......well here it goes....
Jake received his Rituximab protocol in January 2007, Jake tolerated the treatments well, and all was on track. Jake remained on high dose ACTH until April, at which time we started to wean again. In January Jake had started to get pretty severe diarrhea, which we all hoped would just clear up on its own, as the stomach flu was going around. To our dismay, the diarrhea got much, much worse throughout the next couple months (to the point that Jake was going every 20 minutes and up in the night). Every stool sample imaginable was collected (I hope I never have to put that much poop into jars again in my lifetime) and everything was coming back normal. An ultrasound, and x-rays were taken and blockages were found in Jakes intestines. He was admitted onto the Pediatric floor where an NG Tube was put in and Jake was flushed for about 12 hours....not a pleasant experience (Jake was however the first patient to eat and drink with an NG Tube in!!). The flushing worked and cleared the blockages. In May Jake was seen at CHEO by a GI specialist, who immediatly booked an upper and lower endoscopy because of Jakes history. The endoscopy was done in June along with a repair on Jakes port-a-cath (the line had gone into his heart and had to be pulled back out). The results of the endoscopy were good and no signs of cancer where found, although he had polyps just below his stomach. These polyps can become pre-cancerous and are quite uncommon in children Jakes age, because of this Jake will have to undergo a complete scope from top to bottom in June 2008, with his next round of testing. Jacob also underwent his schelduled week of testing the end of June, and he was cleared of any recurring Neuroblastoma (very good news).
With the wean of the ACTH ending the first week of July, Jake fully relapsed with the OMS by the third week of July. This relapse was severe and he was rushed to Springfield, Illinois to see the specialist for another spinal tap and testing. Mike travelled with Jacob alone on the 6 flights it took to get there and back (we couldn't get a passport for Natalie in time). It became very apparent that Mike would have to take time off work, as Jacob became very aggressive and violent this time. Jake needed constant care around the clock, and became increasingly irritable to the point were all he did was scream and shake. Jake was immediatly started back on ACTH at a high dose every day, and we awaited the results of the spinal tap to determine what would be added to the mixture this time to try and get the OMS under control. The results of the sprinal tap were not good, Jake has a severe form of OMS in which his immune system has become disfunctional (the specialist in the states has never seen this before). Because of the cells involved there was little left to try treatment wise. After a month of research, it was decided that a 6 month trial of a chemotherapy would be tried (we are told there is not much hope that this will work). Jake started the oral chemotherapy in October, and is given a dose every week. He has weekly blood work, and some weeks twice weekly depending on his potassium levels. So far Jake has escaped any major infections, although he has been hospitalized for low potassium levels, so far soo good.
This week Jake will start a slow wean of his ACTH again and we have just moved to every other day dosing for the first time since July. We have been having a lot of trouble controlling his blood pressure, and potassium levels this time and he is on a lot of medications daily right now to keep everything stable. Jake has had some increasing bone pain again and is starting to limp, but is in very good spirits....
Some good news!!!!
Jake welcomed a new baby sister on March 5, 2007--9lbs...Natalie Mary Squarzolo....Joshua and Jacob are very proud big brothers.
Jake started school this September, although he hasn't been able to attend a lot of classes yet....he really enjoys himself when he is there..
We hope to see everyone this holiday season....the boys are very excited for the annual NOFCC and Fire Fighters Christmas Parties this weekend. Wishing everyone a very Merry Chirstmas and Happy New Year....
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