Day +430: Another Bump In The Road

It's day +430 for Max and unfortunately, we have hit another bump. I feel it only fair that to truly represent the voyage of a BMT patient/family, I need to share both the ups and the downs. Beginning Thursday at about 4:00 pm, we started to hit another, hopefully relatively minor bump in Max's BMT road.

He had spent the day enjoying himself. He went to a movie with his tutor, her son and Alex to celebrate the end of the school year and had a great time. He was playing outside and came in to tell me that his left ear hurt. I immediately thought of all the swimming he had been doing, thought it might be swimmers ear, and quickly called our Nurse Practitioner at Children's to see if she had any suggestions to help him out. She recommended letting it be and calling the on-call BMT doctor if anything worsened overnight so that he could be seen down at the hospital. Max made it through the night but, not without waking up about every 2 hours with ear pain. So, first thing Friday morning, I called our Nurse Practitioner again and they squeezed him in for a clinic visit yesterday.

We headed down to the hospital, thinking that we would hopefully be in and out within an hour or two with some antibiotics for his ear...but, that is not how this BMT world operates! Reality check time! Once we got there, three different Nurse Pracitioners checked out his ear. Although they could not see beyond the wax in his ear, they assumed it was infected based on his reaction to their touching/pulling on it. I pointed out a few bumps to them that have been coming and going on Max's body the last few weeks and that's where the concern started. They ended up bringing one of the BMT doctors in and she suspected that the bumps may be chicken pox. As a result, they kept us for six hours, had Max get an IV so that he could get a bolus of fluids, an antibiotic and an antiviral that could help if it were chicken pox. They won't have results of the testing that they did for a day to three days so, we won't know if it is chicken pox or possibly some other virus until then.

Of course, this was all quite a shocker to Max and I. He did not handle it well, to say the least. At the worst point, he had backed himself into the corner of the bathroom attached to his clinic room and was screaming at me and the three nurses in the room. He kept saying, "I have been through enough! I am NOT doing this today! I am in charge of me and I am leaving!" He was basically hysterical and thus, I was a mess as well. We finally got him up on the table to get his IV but only by threatening him that I was going to leave the room first. It was awful...awful. Thankfully, once we got the IV in and the fluids and meds running, things calmed down and he took a good nap for about 2 hours. He had thoroughly exhausted himself emotionally and physically. I was again amazed and impressed with the nursing staff and our Nurse Practitioners. They made sure that I was alright as well as Max. I had some wonderful discussions with two of them and it really helped me to put everything in perspective. We did get to come home last night, which we are beyond grateful for, and that made all the difference for Max. He came home on two new oral meds and two new ear drops so, it kind of feels like a step backward, to say the least. But, he has been resting here since and is showing some improvement today. We are keeping a close eye on him and are happy to know that Dr. Davies is on call this weekend, should anything worsen.

I share this situation with you because I think it's important for you all to know about both the ups and downs that we are continuing to experience, even at this point in our journey. This remains tough...very tough for all of us. Yesterday was a huge reminder of how delicate Max's health remains and how important it is for us to drop everything anytime that things are not quite right with him. It was a reality check, to say the least. This is our life now and for some time to come yet. I alluded to it in my last post...this is what I meant when I said that we are not "back to normal." We really are not even close.

We are so grateful for the excellent progress that Max has made and for so many things about this journey. We have learned so much and truly experienced a miracle. Yesterday was just a reminder that we have to continue to take things slowly, one day at a time, appreciating every moment we have together.

Matt and I are determined to continue trying our best to pay it forward at the same time. Yesterday, Matt played 100 holes of golf with the Cincinnati Golfers for Charity (CGC). With this event, the CGC raised over $100,000 for the Make A Wish Foundation and Cancer Free Kids, two amazing charities. Matt was thrilled to have surpassed his fundraising goal of $2,500, with the help of many of you. I am continually encouraged by our progress with Max's Meals and the Pepsi Refresh contest. We are climbing up the ranks and are currently in 61st place. I think with persistence and daily voting, we may make it into the top 10 and get the $5,000 grant for Max's Meals!

As you all know, Max, Alex and Ellee are the most precious people in Matt and I's lives. We will do anything we have to do to keep them safe and happy. Our tough experience yesterday reminded us how fragile life is and how important it is to live in the moment. We hope by sharing our life, you will find yours even more meaningful.

We'll keep you posted...

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)