Saturday, January 31, 2015

Happy Anniversary...sort of

On Wednesday, we met with Dr. Cahill, Julie's lung transplant doc and she informed us that there was a possibility that the tumor was a result of having EBV (Epstein Barr).  In that case, there is no chemo and the surgery to remove it is all that is needed. We were discharged from the hospital Thursday morning.  All in all, Julie is recovering very well eating solids Wednesday night and feeling just some of the effects of being intubated (Horse voice, with a little chest congestion).  Her CT scan was clear other than the tumor that was removed.  We had a lot of peace on Thursday even though the looming possibility that we would be undergoing more treatment.  The peace is something I can thank others for.  We have had an outpouring of love and support.  People of all backgrounds have kept Julie in their thoughts and prayers.  As I have said before, she and I can feel it.  It is a real power that we cannot deny.  We may be jaded from the past and that curbs the emotional reaction one might have, but we are still human.  Yet we have been able to really see things as they are in front of us and not dwell too much on what is currently unknown and out of our control.

Yesterday was our 8 year anniversary.  It was met with some preliminary results that were not welcome.  The tumor was malignant and pathology is still determining exactly what type of treatment will be best; We will go to Huntsman Cancer on Tuesday for a consult with an oncologist who works with most all of Cahill's transplant patients.  We were told they will do a PET scan at some point.  PET scan is a little different than an MRI in that a radioactive material (tracer) is injected to see where it collects so the radiologist can see areas of concern with more detail.  Most likely the Lymphoma is Post Transplant Lymphoproliferative Disease or PTLD.  We are still optimistic since the surgeon said the liver was clear and everything around the site looked "clean."  In addition,  her blood is taken regularly to detect cancer and nothing has shown up.  The CT scan done in the ER last Monday was clear. Lastly, the tumor is gone, out of her body and she feels much better than she did.  Frankly, Julie just wants to be able to still go on our trip to Hawaii next month...cross your fingers.

Tuesday, January 27, 2015

Back Again

Just under 4 years after Julie's transplant and we are back in the OR. She has something called intursussception of her bowel that really was at its worst today. (Just google it instead of wondering like I did) However, the fortuitous events of pre-op are worth noting: For one, I was here and not on the east coast stuck in a nor'easter.  More seriously, Julie has suffered on and off from abdominal pain since sometime in November. Today it was at its worst, but we were here at the UofU hospital for a clinic visit. After checking into the ER, an ultrasound, and a CT scan we found out why; The condition had created almost complete blockage. Any longer without intervention and her colon would begin to die. We couldn't have been here at a better time. In addition, we have the same nurse anesthetist as last time, Julie's anesthesiologist neighbor growing up was on service, and the surgeon is one of the top surgeons and academics in his field...again. Sitting in this waiting room alone with Julie's Dad brings back many memories. We went back to the OR around 11:30 pm just like last time.  I was also writing a post titled "To my Twin boys" at this very hour.  That post was much heavier since Julie's life was literally on a thread.

Rewind a few months to November. Julie caught a cold early in the season just after Halloween. It didn't stop her from putting up the Christmas tree the day after Halloween.  She does that just to irritate all the holiday purists out there...ok it's just because she loves Christmas and the last thing she is worried about is what someone thinks of her decorating tastes.  In fact we just got around to taking them down last week. Why do people stress out about that crap? But I digress, she had some lulling pain in her abdomen but she just thought it was part of the virus. As the holidays came and went Julie continued to ebb and flow in her recovery. As soon as she would start to get better, she seemed to catch something again. This is the life of a immune suppressed person. In January she was able to have some pretty powerful antibiotics intravenously to help clear her lungs once and for all from the residual effects the viruses may have caused. Prior to, and during that two week regimen she felt very uncomfortable in her gut. We did various things like break out the triangle pillows to sleep upright, took more laxatives than she normally does, and tried different diets to identify what was causing the discomfort. As the antibiotics started she became nauseous so we assumed they were the sole culprit. Now we know the nausea and stomach pains of the holiday season were in part from this condition she was treated for tonight.

Since I started writing this post, I have had two updates: first one was they were able to do the surgery laparoscopically and not open. This is a big relief. After just over an hour, Julie's surgeon came out and gave us another report. He was very positive. She handled the anesthetic well, had a few small incisions, and they were able to remove the bowel and sew the two ends together. Now it's the waiting game. The cause? A tumor inside her bowel about 4cm (1.5") that caused the overlap or telescoping of the bowel. Ironically on Sunday she said to me, "what if it's a tumor?" Another lesson to always listen to your gut...pun intended. Though she said a lot of things it could be over the last few weeks, it's always good to rule things out and don't just write that patient off as webmd crazy.  She may be onto something.  We should know by Thursday this week of the tumor was malignant or benign.

Aside from all this, life has been unreal for us. I haven't posted because I haven't needed to and we have just simply been enjoying our kids and each other.  Julie gave birth to our beautiful son Charles just 1 year ago; no complications, just 5 weeks early, and little like his brothers. He's now our little buddy and it has been a huge blessing to have him join his brothers. Ben and Jack are in Kindergarten and Julie is on them like white on rice everyday. They handle the pressure to do homework remarkably well. Better than I ever did.


Julie has often recalled that when we were posting years ago, before and after the transplant, she could "feel the prayers of others."  It's a surreal experience to go through for sure. But really, the reasons for posting have always been the same. Keep a record for my boys so they can see their mother's strength and her faith in Christ, and solicit prayers on her behalf. The latter is a selfish approach that I apologize for if it offends. But once again my back is against the wall. We often joke that Julie and I try to think of the riskiest thing we can do, and then do it. Though it is not deliberate that we continue to face some heavy things, we will always rely on any power that we hope and believe is out there. No matter what your belief is, we thank you for your thoughts and prayers. In our eyes there is a real power in them, and frankly it's proof to us that God is real and he hears our prayers. The prayers certainly have not taken bad things away from our lives, but they have helped us see through these problems.  They will not guarantee good outcomes, but we wouldn't know Christ if that's all we were given. We have come to know Him better as we have faced the unknown time and again.  My hope in writing this is it will remind you to remember what you know and you have been blessed with instead of harnessing what you don't know and haven't been afforded.  Thanks again, and God Speed.