Joel and I headed to the hospital yesterday, it has been an on going battle to get the physio, occupational therapy, and speech therapy that Joel needs. I think we are starting to make a bit of head way. Joel had a reassessment done with speech to make a new referral as he has been on the waiting list so long that the last assessment is now obsolete.
She wants to see him again later this month to complete the assessment the good news is she sees progress. Unfortunately, she feels that much of his speech issues are neurological and doesn’t know that he would benefit from speech therapy. That being said she won’t rule out that there could be some benefit to speech. She feels he has some grammatical issues that could be helped with speech therapy. When Joel gets stuck looking for a word, or repeats the last word over and over, or speaks rather loudly those are all neurological issues.
When it comes to neurological issues the doctors have given us nothing… no promises one way or another. When you talk to them they are very vague and imply we should be happy with what we have. Our speech therapist was rather optimistic, but again can’t say with any certainty what will happen with Joel.
The problem is you can take 20 kids all diagnosed with Medulloblastoma and they can all come out of surgery with differing side effects. Yes, you may have overlapping side effects, but you might have a child who can’t swallow. That was not an issue for Joel but that same child’s speech may be just fine. Another could lose their sight but be able to walk just fine. Kids who have brain tumors have a long haul, different from some other types of pediatric cancers, because your dealing with the brain there are ongoing issues. Of course, there are other pediatric cancer that cause ongoing issues but for many cases those kids can go on to lead perfectly normal lives.
I belong to an online Pediatric Brain Tumor Group and one of the wonderful Moms on that group said this, “The great thing about Medulloblastoma is for many of us there is a long haul.” At first glance one might think what is so great about that, what’s great is there is a long haul, sadly, there are many tumors that are inoperable. Medulloblastoma have a higher survival rate than many other types of tumors. Depending on who’s study your reading I have seen percentages from 60-85% for standard risk Medulloblastomas. Sadly, I know too many who’s stats aren’t that good.
So, we rejoice in the long haul, I do wish our doctors could give us more information. For now we take it one day at a time and continue to pray for healing. On a good note, Joel also had a dental check up, radiation and chemo can cause havoc in the mouth, but Joel teeth gums, cheeks etc. are the picture of health!!!
Thanks for your continued prayers and support we feel it.Pin It