March 29-30

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Carlos had two appointments that went well and didn’t result in a list of more appointments! That’s become a rarity.

Thursday the 29th we went to the Gastroenterologist with the recommendation from the Radiology Oncologist to get a PEG feeding tube placed.  (Read about that appointment here)

We left this appointment feeling like God had laid out a red carpet for us. As if He was showing us that He sees us, and He has the right people in place for us.

I rarely choose Dr’s without referrals from friends and family. I’ve had to do that through this journey several times. This time we had a time crunch as we were told to have his tube placed prior to any other appointments. I called a few places and chose the one with the earliest appointment that took our insurance. A wing and a prayer people!!

The first sign that we were in the right place was our encounter with the nurse. She asked where he is being treated and we told her City of Hope. She then shared her story of when her three year old son was treated for a rare stomach cancer in their Duarte branch before the Lancaster one opened. He is in full remission now. I couldn’t hold back the tears or the hugs as I listened to this young, brave mom who sacrificed so much for her son and now uses his story to encourage others by working in a gastroenterology office.

We sat with the Gastroenterologist and he explained everything and then let us ask questions. He agreed it may be necessary to keep weight on, keep calories high enough to maintain energy, and keep well hydrated. Then we heard the sound of angels when he said “you don’t have to have it put in until the need becomes obvious”.  That was contrary to all the other Dr’s! He explained that it is a simple, low risk procedure and he can do it the same day we ask for it, and it could be used the next day! He assured us it could wait! He did confirm the need to maintain weight, calories and fluids and said that if that becomes too hard, he will make sure he gets the tube the same day he asks for it. He was so nice and sat with us and not one moment did we feel rushed or petty. He was super kind!

We finally got to leave an appointment feeling excited! Praise the Lord!

Friday was the Dentist. Since it was the last day of Robby’s Spring break and we had done nothing fun all week due to all the appointments and being plain worn out, I skipped this appointment. I took Robby and a friend to a jump place and Michelle and I went to visit my parents. It was refreshing!

The Dentist went well, he had a cavity filled and a deep cleaning and was given the required letter of clearance for treatment. He has a few crowns that are needing to be redone but was told those should wait for after treatment. Yay! Another good news appointment!

I’ve been asked a lot if Carlos is in pain. The answer is sort of. He is definitely uncomfortable with that huge tumor in his throat. Eating is tiring because he has to chew everything until it’s mush and chase every bite with water. He has lost almost 20 pounds so far. He drinks a lot of smoothies and soups. Eating also irritates everything and increases the discomfort and coughing.  The enlarged lymph nodes in his neck seem to be pinching some nerves and causing sharp ear pain. He described it as something stabbing his eardrum. He’s been having that pain all along but it is slowly getting more frequent, almost constant. About a month ago he started taking ibuprofen once or twice a day for it and it helped a lot. Lately he has had to stay on top of taking it every 4 -6 hours or it’s hard to get back in front of that pain. He can’t tell if  he has become tolerant to the ibuprofen or if the pain is just getting worse but he’s having a harder time getting to a place of comfort.

Thank you all for your prayers, kind words, deliveries of Ensure, meals and hugs! We appreciate all of it! This week should be smooth. Only one appointment to do on Wednesday. In the midst of all this, we found out that since our insurance changed March 1st, he has to change his primary care physician. Not great timing, but no big deal. We will meet the new one Wednesday and he’ll have a full physical so she knows his baseline for all the not cancer things.

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