| June-Aug 2006 |
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| June 2006 June 9 I am updating today from the Ronald McDonald House so I hope this works!! We have been in Ottawa almost a week now....A bone scan was done in Sudbury a week and a half ago now to determine whether things inside Jacob's bones had changed.....and we were rushed to CHEO last weekend to start more testing this week. Jacob's left femur has developed a mass on the outside of the bone and the mass that was inside the bone 4 weeks ago is now protruding out into the soft tissue. Jake had an MRI, MIBG, ultrasound, and was taken to the OR Thursday night to do another open bone biopsy---the surgeon removed the mass on the left femur and also took more bone out to send to pathology. Jacob is at increased risk now to fracture his femur and is very uncomfortable. He spent Thursday night in hospital and is now resting at the Ronald McDonald House (he will remain off his leg for two weeks). The original round of tests done 4 weeks ago came back inconclusive and this time there is a lot of tissue to test, and doctors are hopeful that we will finally have a treatment plan in place soon. We are awaiting the preliminary pathology report today (at the latest Monday) and if they are inconclusive then we will have to wait for the bone sample to de-calcify, which could take up to two weeks. I will update as soon as we get news on the pathology reports..... |
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| August 2006 August 16 What a rollarcoaster ride over the last six months.....to date there has been no firm diagnosis of Jacob's bone leisons, all pathology reports and all testing done have come back negative for Neuroblastoma, and have shown no sign of infection. The oncology team at CHEO has searched throughout the states and Canada for a specialist to see Jacob and we received a call this week to let us know we will be going to Sick Kids in Toronto to see a Pediatric Orthopedic Oncologist there. Jacob took about six weeks to recover from the bone biopsy done in June, and is now running again with the help of some physiotherapy. We were given the go ahead the end of June to finish out our Rituximab protocol for Jacob's OMS treatment started back in April and Sudbury was able to gain funding to finish the last two treatments here, a huge bonus since we had done so much travelling the previous three months! The treatments went well, with Dr Murray present throughout. On the last treatment the beginning of July Jacob's port stopped working and clotted and we were back to Ottawa to have another surgery the following week. The surgery went well and Jacob's new port is working well, the old port which had lasted over two years had actually started calcifying in his system and was falling apart (the surgeon had trouble getting it out and Jake was very bruised and sore afterward). Jake ended up spending the night at CHEO and also received his IVIG infusion overnight before we left. Jake was happy to see all of his friends there....Jacob loves pickles and Molly (the clown) calls him the "pickle man" which Jaocb gets a huge kick out of! (she had made him a pickle popcile during his last surgery in June!) Since our last trip to CHEO Jake has been doing really well, we got our first chance to visit relatives in Peterborough and took the kids to the Toronto Zoo (both boys loved the water pad!!). This trip was really special for the family especially Jacob......he woke up the first morning in the hotel and started crying when I woke him up to go to the zoo.....he was hysterical and his first words were that he didn't want to go the hospital today to have a needle (I had never thought about it before, but in the last two years we have never stayed in a hotel other then to take Jacob to an appointment at the hospital) The expression on his face when we told him that he didn't have to go to the hospital today and that we had woke him up to go the zoo was an incredible moment. We have also been able to get to camp in the last week and Jake has been fishing and is enjoying the summer months. Thank You to everyone for thier continued support for our family......Jacob is due for his IVIG infusion next week and I will update when we have word on his appointment to Sick Kids. |
| Jake fishing at Camp August 2006 |