Update: Day 50 and counting. Matthew has had a busy week of playing :). He is walking daily which improves his leg muscles, balance and overall strength. He still stays he cant walk good because one foot goes out instead of straight and he looses balance at times but this is not a new issue and is due to his neuropothy he developed during his Induction phase. With practice comes progress and nothing that we havent conquered before. Tuesday, he had his lumbar puncture and interthical chemo which made him officially in the Intense Maintenance I of 4 phase. YAY!! This means (god willing) inpatient treatment every 7 weeks rather than every 3 weeks. Once he clears the high dose Mtx chemo (average 3 days), his new central line will be put in. Because he will be in constant access with an iv for the next 6-12 months for the NTM infection, along with CT scans once a month to monitor the lung nodules along side his chemo treatment, his Dad and I have opted to go with a double line power broviac rather than a double lumin port. This will keep him from having to be poked weekly and have an additional line for the contrast CT. This type of line is new to him and us but seems to be in his better interest. Yesterday the Oncologist had said that discharge not likely before next Tuesday due to time frame of clearing the chemo and an opening in the OR to place the central line. However this morning, they relayed that they were able to hold an OR room Friday for the chance that he clears sooner. This means we could be home bound as early as Saturday. Matthew is already counting the days. I have also begun a project...... a little keep sake for him. Matthew is known (when feeling okay to great) as being a chatty, mischievous and feisty patient and I have heard the nurses and Drs alike telling stories, most being funny and or shocking. So I bought a journal where the CHOC staff that have all encountered him, can write in a moment or memory of him. I will also add in small photos to go along with it. I would also like to somehow incorporate his FB supporters to show him how much he is loved and impacted this world. I have not yet figured out how and welcome any ideas. THANK YOU ALL SO MUCH and look forward to hearing some ideas.
Posted on: Thu, 08 Jan 2015 02:33:48 +0000
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