More Tests – November 11, 2015

Miss Emma continues to do her best worry her parents! It has been a long few weeks, and I wish I could say we finally had answers for what has been bothering Emma, but we are still working on it. We met with Dr. Sammut, the pulmonologist, yesterday to find out the results of the CT scan and his thoughts on what is going on with her lungs. He felt that just looking at the CT scan it would appear that this is something viral; however, he is concerned that she has not fully recovered. He was also concerned that after stopping steroids on Sunday she seemed to get a bit worse again. Her lungs continue to sound a bit wheezy and her oxygen level is at about 94-95 at this point.  The steroids are not a fix and are simply making her symptoms better so, he feels like we need to do more testing to find out for sure what is going on.

Dr. Sammut’s recommendation at this point is to do a bronchoscope procedure in order to get more information. Emma is scheduled to have this done as an outpatient procedure tomorrow afternoon. A bronchoscope involves sedating Emma and then putting a small tube with a camera down her airway and into her lungs so that the doctor can visually see what her lungs look like on the inside. This procedure also allows for them to collect some tissue samples that can be analyzed to determine if there is a viral, bacterial, or fungal infection that could be causing these issues. If they are able to find something specific in the testing they can more effectively treat her. The bad part is that it will take at least a week to get the results of this testing as we have to wait for the samples to culture. Dr. Sammut said that if all of the testing comes back negative and her symptoms continue we will have to consider that there is a reactive lung problem as a result of the chemo therapy she is taking. We are praying this is not the cause of the problems because we don’t want to have to stop this treatment.

We also met briefly with Dr. Abromowitch yesterday. She felt Emma looked better, but is not well enough to start chemo again. We are due to start her 5th cycle of oral meds, but she feels it is best to wait until we get the results of the bronchoscopy because if it is something viral she doesn’t want to give her chemo and drop her counts again. She also wants to be sure it isn’t damage from the chemo causing this because she doesn’t want to give her more of the CCNU chemo drug if that is the case. She unfortunately also wants to keep Emma home from school another week. Poor Emma misses her friends from daycare and preschool so much and asks daily about going back. Believe me we would all like nothing more than to get her back to friends and all get back into our normal routine.

We also received a phone call from Anise, Emma’s nurse yesterday before our appointment. Evidently the radiologist saw a spot in her neck on the CT scan in the area her first port was located. The radiologist was concerned that it could be the tip of the catheter from the port left behind, a blood clot or a calcified clot (scar tissue). So we of course got the privilege of having an ultrasound on her neck done yesterday. The first technicians couldn’t see what they needed to so the actual radiologist had to come do it. From what she said she thinks it is a calcified clot, so scar tissue left behind from her first port. We haven’t heard the final report yet, but are hoping that is the case.

These last few weeks have certainly been another test of patience and strength for Emma and our whole family. It has been a reminder we can never take for granted the times when life is going well, because weeks like these are exhausting and wear on us all. While I often feel like our “normal” life is very far from “normal” these last few weeks have been closer to the chaotic side of things. It is so hard to watch Emma not be her happy, normal self. The steroids made Emma extremely emotional and she didn’t sleep well. We are glad to see that each day she seems to be getting closer to being her self again. We are so thankful for all of the support and prayers that you have all been sending our way. We are incredibly thankful for the wonderful family and friends who have pitched in to come and watch Emma for us so we don’t have to take off even more work. We couldn’t do it without you! Thank you also to everyone who continues to send messages, prayers and meals for us. It is your strength that helps to keep us strong even on the days it seems so hard. Emma wants to say a special thank you to her friends at preschool who send her cards and pictures, which she loves to look at, as well as the many gifts people have sent her.

I really wish we could get her better so we didn’t have so much to fill everyone in on. Hopefully the tests tomorrow will be a step in finding out what is going on and how to get her better. If you have a few extra minutes we would take a few prayers for the procedure to go well tomorrow as well the results to show something that can be treated, not that the chemo is causing this. Thank you for helping us to stay #EmmaStrong!!