Clinic Visit yesterday

Yesterday marked another milestone…a great clinic visit with terrific results. Ethan’s labs continue to look fantastic. We arrived in the afternoon, immediately had Ethan’s blood drawn, and were out in 2 hours. We saw a nurse practitioner that we knew from transplant, as Ethan’s doctor is out early on maternity leave. I learned two things from her yesterday:

1) Since Ethan’s stroke, and because of Ethan’s stroke, the transplant unit has reviewed and revised their medical review process of their patients. It wasn’t only us that was shocked that Ethan had a stroke, it was the entire transplant team. Essentially, Ethan should have never had his central line in for as long as he did, given that he had a PFO (hole in his heart). And, he should have been identified as having a PFO long before having had his stroke. Ethan had an echocardiogram during his pre-transplant work-up. While the PFO was noticed by cardiology at that time, it was not noted and communicated to the transplant team, as a PFO is a common condition (20% of people have it). The transplant team has discussed Ethan’s case with cardiology, reiterating the importance of such a condition. Cardiology will now do a better job of highlighting such conditions during pre-transplant testing, and the transplant team will ensure the kids with PFOs and central lines don’t keep their lines in longer than necessary.

My feelings around this…I’m thankful. I’m thankful that something good came out of Ethan’s stroke. I’m glad procedures/processes were reviewed and modified. I hope that it never happens again to a child. I’m not upset that things were not done differently initially. Yes, I wish Ethan’s stroke never happened, but he recovered so well, I’m thankful for God watching over him. We’ve been very close to the medical field for 6 years now, and we’ve learned that mistakes happen, that everything is not always done perfectly, and medical experts aren’t experts in every aspect of medicine.

2) Ethan will have a bone marrow aspirate at his next appointment in 6 weeks. While Children’s Hospital doesn’t do bone marrow tests as follow-up to transplant patients, Ethan’s St. Jude’s protocol that he is on requires follow-up bone marrow tests to test for minimal residual disease (MRD). Since Ethan’s completion of his first round of chemotherapy, Ethan’s MRD has been 0% – meaning no leukemic cells detected in his bone marrow. Technically, this equals remission. Ethan has been in remission since June 2007. Hallelujah! Thank you God!

Anyhow, as far as I’m concerned, Ethan is where he is today because of the St. Jude protocol he was on. He got randomized to the high dose of chemotherapy drugs for his first round…his MRD was then ZERO…and he kicked some BUTT! So, if Ethan has to be slightly sedated and have bone marrow aspirate to help further this study…so be it.

St. Jude Children’s Hospital will do the analysis, and results will be communicated with a couple weeks from the test.

As I mentioned, we’re due back in 6 weeks, April 16. He’s still on track to come off restrictions on May 6. In the interim, we’re starting to get do fun Spring stuff. This week we went on our first field trip to Byfield, to visit a man that has a “Sugar Shack” in his driveway/side yard, making maple syrup. We got to plod through the spring mud and see the taps, buckets filling and sap boiling. Today, we emptied out the ice rink. Eliot was the saddest of all – losing his pool, and afraid of a flood (we just read a weather book that discussed floods).

Ethan and Emma are making progress with their school work. It’s hard for me to see daily/weekly progress, but I compare to a few months ago I can see a remarkable difference. Even Eliot is now writing his name, and enjoying doing his “school work”.

At this point we’re kind of overwhelmed with gratitude. I don’t think we thought we’d make it this far, and we have. We’re so thankful to God for bringing us this far, and for every day we continue to have together. We still worry, we still wonder, but we’re so thankful. Each monthly visit gives us more hope…lots of hope! Looking forward to seeing everybody soon!