June 24, 2016 Trust in the Lord

Today was our second visit to the HEMOC clinic which will be weekly, for now. This includes an overall evaluation, change PICC line dressing (not fun), blood work to check our CRP level (inflammatory markers) which is crucial right now, X-ray (didn't have to do since we did it in the ER yesterday), and meet with the doctor about status, new information, and discuss the current and/or revised plan.

When all this first started our CRP level was crazy high in the 30's where normal is less than 0.5. Yeah, he was outrageously high. After starting steroids we got all the way down to 3.5 which was fantastic. We decreased the steroid dosage this past week and with fevers popping up again the past two days there was cause for concern. Unfortunately, our CRP level today was 26, significantly higher. 👎🏼 The chest X-ray from the ER compared to last Friday "wasn't clearly better or clearly worse" according to the doctor, but it appeared to look a bit worse so that along with the increased CRP level and fevers has her concerned.

The much anticipated report from the specialist at Harvard came back. Like the others, he "found things to be very difficult to classify with certainty and he could not fit the appearances neatly with any defined "entity."" A lengthy explanation cut short - he indicated "at this point he would be descriptive and label this as an atypical spindle cell neoplasm, possibly myotonic in type." So basically, abnormal cells; a non-specific pseudo tumor. He indicated he did not see definitive features of malignancy, at least in the sample he had, but the appearances were somewhat worrisome and therefore advised everything being completely excised. Of course, that's what everyone wants - for it to be safely removed.

With the report back from Harvard, and still they aren't certain what this is, the doctor now wants to, and is able to, send samples to St. Jude's. This could take at least a month to get back. St. Jude's is ok with providing second opinions, but we're told they are very very selective with accepting patients. They want cases that are neat/rare/different/difficult... Well, we're pretty certain we qualify. We would anticipate if they're able to help diagnose, or get us closer to diagnoses, we would still do the surgery here. Actually, Children's Mercy is the "grandfather" of pediatric surgery..people come here to train so there are top pediatric surgeons here. However, the backup plan if it can't be done here, would be to go to St. Jude's, if possible.

The most recent X-ray, fevers and CRP level today necessitates another CT scan so we'll be doing that on Monday to see where things are regarding inflammation, tumor status, etc. We need the CRP to go DOWN so the doctors can differentiate between inflammation and tumor, and create a safer environment for resection. The CT scan will help check his status for surgery. It typically takes 6-8 weeks for inflammation to calm - Cole's body is very "hot" right now and we need it to "cool" to even consider surgery. Cole's surgeon wants to wait at least 6-8 weeks, if possible, before going in and he's pretty adamant about that being the safest plan for Cole as it's too dangerous right now. Going in too early could jeopardize things such as creating bleeding problems from the inflamed tissue and possibly removing good tissue. We need to keep as much good tissue as possible, of course. We are trying to save as much (hopefully all) of his lung.

However, the doctor is a bit worried about the tumor(s) and hopefully the CT scan will show it has NOT grown or spread. Additionally, she can't rule out malignancy at this point although things appear non-malignant as best they can tell now based on the pathology reports. If the tumor has grown then there will need to be a negotiation with surgery about a safe, but middle ground regarding when to do surgery for resection.

So, although we still don't have an exact diagnoses, today gave us more information than we had and the doctor still has a plan and a back-up plan. We may never get an exact diagnoses or be able to "name" whatever this thing is, but the main objective is getting Cole's body to a safe place to go in and get this stuff out safely and keeping as much lung as possible, hopefully keeping ALL of his lung.

We pray for inflammation to go down, pain to decrease, POOP, nutrition to go up, and that the tumor has not increased. Yes, it's a lot, but we need all of these things to happen to move forward toward the goal of safe removal.  We're making progress..

"Trust in the Lord with all your heart and learn not on your own understanding; in all your ways submit to him, and he will make your paths straight." - Proverbs 3:5-6