Important Updates and New Challenges — February 2021

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Hello everyone! Once again time has gotten away from us despite our best intentions to update all of you sooner.  Our last update was in November and a lot has happened since then.  So I want to bring you all up to speed and let you know how things are currently.

Josh has been fighting what feels like an uphill battle in the past few months.  He has had a C-diff infection since October that finally seems to be cleared up. He had an MRI in December that indicated his tumors may be growing again.  He had a hospitalization in January, for what we thought at the time was possible seizure activity, and he had a specialized MRI that not only confirmed that the tumors in the thalamus and cerebellum were growing again (and at an enhanced rate) they found a third that had developed in the frontal lobe. And with that news, we received confirmation that the neurological changes he has been experiencing since January were all because of the progression of the disease. 

In early January, Josh experienced what neurology is calling “episodes” where he his head would tilt, his eyes became vacant and  communication became difficult or impossible. This is what led to his hospitalization at Devos and a lengthy EEG to make sure these were not seizure activity.  Walking has also become difficult if not impossible as his balance and coordination are being affected, as well as issues with fuzzy vision and dizziness.  So he is back in the wheelchair to move about the house and he needs us to help him transfer safely.  For a time he was experiencing motion sickness when he would get up, sit up too fast or even be pushed in his wheelchair, but that has been better as of late.  He has also been really tired and needing naps frequently and has had more difficulty with word and memory recall.  The latest symptoms to arise are issues with swallowing and a thickening of his saliva that has cause some difficulty with eating, drinking and causing his talking to be garbled at times. It is also causing him to gag on occasion and he needs to clear his throat often.  He is now on a steroid to hopefully help alleviate some of these new issues.

As for treatment plans, he was taken off his last chemo regimen as it was not successful  and is presently not on any chemo and is involved in what is called a ‘Match Trial.’  For this, his oncology team took a piece of his original thalamic tumor and sent it in to the Children’s Oncology Group along with specialized blood work.  The tumor and blood samples are being analyzed to create a full profile of his cancer in hopes that there is an investigator somewhere looking to trial a new treatment plan that is targeted toward the specific mutations in the DNA of Josh’s tumors.  Even if a match is found there is no guarantee that it will have any success shrinking the tumors as there is a possibility that they have changed genetically due to the radiation and chemo medications he was on previously, but we are hoping that an option will surface for him to consider.  The doctors do not want to even consider a biopsy or resection at this point as each tumor is in a difficult location and the risks far exceed any benefit and most likely would reduce his quality of life further.  So, at the moment we are awaiting news from the trial and working on controlling the symptoms he is experiencing and taking things one moment at at time.

 We have been told since the beginning that this cancer was aggressive and would not be “cured,’ our goal all along has been to keep it at bay for as long as we can and keep him happy and comfortable as we hope and pray for new treatments to arise.  He has done amazingly well, and still continues to have an amazing spirit and drive.  He definitely has his down days, but that smile always manages to reappear.

Despite all of these happenings, we have had many happy times. We had a great holiday season, Josh’s Make A Wish for a gaming computer was fulfilled (more on that later), celebrated Elijah’s birthday, and have had friends and family stop by for visits, some who we hadn’t seen in months. And we look forward to many more bright moments in the future.

As always we are so grateful for all of the love, support, and prayers not just from those closest to us, but from all of you both near and far.  There are many days where we lean on that to keep us going.  So thank you all from the bottom of our hearts. 

We will do our best to keep you updated more often!