Surgery and 5 Year Checks

Yesterday Donavynn went in for another set of ear tubes, his bone marrow biopsy, and lumbar puncture.  It was a long day because we had to be there for his pulmonary function tests and fasting labs before his scheduled procedures.  

Pulmonary Function Testing

Every year Donavynn needs to have PFT's to evaluate his lung function.  This is for many reasons - one being the transplant that required high doses of chemotherapy but mostly because of the total body radiation he received.  Of course, they shield the lungs for that but there are still risks.  His extended ICU stay on the ventilator is another reason, and now with the diagnosis of alpha one antitrypsin deficiency - this diagnosis has prompted his transplant team to recommend another evaluation by the pulmonologist in addition to the yearly PFT's.  I don't have the official test results but they did tell me yesterday that they looked good and that his overall function was down by about 4% - which she said is likely due to his recent growth because they evaluate with expectations based on the child's height.  So basically they aren't worried about that slight drop - just think his lungs haven't caught up with his growth. 

Other Results

I don't have the results from his fasting lipid panel or his bone marrow biopsy yet and only have partial results on his CSF (cerebral spinal fluid) - the cell count was normal and cytology is pending. Thus far it is good.  Bone marrow results usually take a little longer and I expect to hear on the other results later today.  I did receive his echocardiogram results the other day - normal with an ejection fraction of 61% - which is also normal. 

Other Information

While waiting to go to the OR yesterday I spoke with Dr. Myers - his transplant physician. I asked him if all his results are normal if we could use the C word - cured.  He said that many people do after the five-year marker but that he typically doesn't simply because he would feel terrible if a child he declared cured ended up being the very rare case that actually relapsed years later.  I couldn't wait to get to the five-year point when this journey began - so eager to use that word, but as the day drew closer I began to fear it.  Maybe, it is a jinx.  So we have decided to use the word survivor and continue to discuss his status as remission for five years. No one knows what the future holds and childhood cancer survivors do have increased risks for a host of other problems as they age - including secondary cancers.  So the fear never goes away, but we are going to continue to pray and be grateful for how far he has come through this incredibly difficult journey he was forced to take.

Surgery went well.  They were able to get the T-tubes in - which are supposed to last longer than regular ear tubes.  His right ear looked good - the old tube was out and there were no problems found. The left ear had the old tube still in place that had moved out slightly and crusted so when that was completely removed there was a small hole left that they expect to heal without a problem and they were able to get the tube in a better location.  We are hoping these will help prevent some of the many sick days we expect with him when school starts since he is more susceptible to a variety of illnesses. Dr. Myers reported that everything went smooth with his part as well.  Donavynn had some slight pain last night after we got home that was easily resolved with Tylenol and is no longer having any pain.  I was grateful to have the team we had in the OR with him and an awesome nurse in the PACU - we worked together a few years ago in the ICU and she is not only an awesome nurse but a wonderful person - so I was happy to know she was taking care of my boy as he recovered from anesthesia.  

I think that is all I have for now.  I will keep everyone posted as the results come in.  Thank you all for the continued prayers!  We are truly blessed.