We received the wonderful news late this afternoon that Mikko’s scans are clear! We have to return tomorrow for the bone marrow results, but we are feeling confident toes will be clear as well.
Here is a recap of our day:
Jon and I woke up early and packed our hotel room up for at this time we still thought we were heading towards home after our 12:00 appointment. We woke Mikko up……
WAIT! I need to back track to last night right before we were going to bed. It was about 10:30 and I was getting Mikko ready for bed. I went to grab the sterlite container with his medications in it and it was gone! We obviously had left it somewhere at the hospital earlier in the day. Panic started to set in. I needed to give Mikko the Lugol’s (strong iodine solution) he needed to yet take that day. The Lugol’s protect his thyroid from the scans. Phone calls were made to security at the hospital to check the lost and found ….nothing there. I then remembered I had a new prescription in my bag that was sent to us from Mikko’s doctor in Michigan. The new mission turned into finding a 24 hour pharmacy to fill the prescription. ( All the while in my mind I’m thinking we’ve come all this way and now there will be no scans because we lost the medication!)
I quickly stuffed Mikko into some clothes and at 11:30 out the door we went and we were on our way to Walgreens. At this time in the search Mikko found the events entertaining. The pharmacist at Walgreens was wonderful. No he didn’t have that medication, but he got on the phone and made call after call to other pharmacies in attempt to get our hands on the Lugol’s….with no luck. He wished us luck, we were out the door and by now it is midnight and my level of panic is increasing. I’m in a class half empty mode, Jon’s is half full ( He continues to reassure me that we will get it.) and Mikko jutted wanted a baseball glove he spotted at Walgreens. No glove…as I was dragging him out of the store, I reminded him that hockey starts on Sunday. He didn’t care.
Now what? Desperation is setting in. I’ve pleaded and begged to countless people on the phone with zero success. My glass is almost empty….I tell Jon to take us to the Emergency department at Helen DeVos Children’s Hospital. Mikko finds this information really interesting…his ears have been “perked up” on this midnight run. He wasn’t going to miss any of it! We pull,up to the ER and we are met by a security guard, a valet Parking guy, and a nurse ( They don’t mess around here!). I immediately get out of the car and begin rambling ” I don’t have a medical emergency. My son is fine. He’s in the car I have a medication emergency.” What a doorknob! A medication emergency?! The kind people let me in the ER, listened to me, made several calls, and after about 1/2 an hour hooked me up with what we needed. Thank you! Thank you! When I got back out to the car Mikko was sound asleep, which provided a whole new dilemma of getting the medication in him, but we did at around 1 am.
Back to today:
We checked out of our hotel room and headed to the hospital. Once again Mikko amazed us by seeming to not have a concern as he talked and was happy on our way. Myself on the other hand, was a little worried because in that lost medicine container was the tube if cream I rub on his arms to numb the place were he will get poked for an IV. Boo!
We got to sedation and Mikko watched the Avengers while waiting for his IV. They had some tricks up there sleeves there and it easily and with only a few tears was quickly placed. We then waited for quite a while before taking the long and confusing walk to the radiation area. At this time Mikko begins saying over and over to me, ” Mom….you are so mean to me,”. Obviously he is becoming anxious, understandably so….but man, each one of those comments dig right into my heart. We get there and the nurse suggests I take Mikko into the restroom before they start. We get in there, he says that comment to me again and I got down on my knees to his eye level. I placed my hands on his arms and I said, ” Please stop saying that to me. I need you to stop.” Nothing like begging… I let go of him, stood up and I heard a very pleasant , ” I love you mom.” I loved him back, he peed and we were on our way and I didn’t hear those hurtful words again today.
He was quickly sedated ( this never gets easier for Jon and I to watch) and we were told we would be paged in about two hours.
The hours when Mikko is away being scanned or having bone marrow biopsies are some of the longest hours of our lives. I pack things for us to read. They always remain untouched. Mostly our time is spent sitting near each other, watching the people walk by, willing the time to pass quickly. Jon’s glass is half full still today and mine is becoming half empty again with fear and what ifs. My comments are quickly cutoff by glass half full guy and thankfully so. He’s not going there and he keeps me from letting my worries go there….well out loud anyways. We both know too well that life can change in an instant. So we sit mostly in silence….until the pager goes off and we beat it down the halls to get to Mikko.
In the past coming out of sedation has gone smoothly. Not today! He was ticked off and not very pleasant. With time his temperament and eye site (he couldn’t keep his eyes open:) ) improved and we went up to the clinic to meet with Dr. Sholler. Here is when we learned for the first time that we needed to come back to the clinic tomorrow. I had wondered how they were going to get the bone marrow results so fast….I should have followed my gut and asked..no big deal. We are here to get Mikko in the study and we’d stay as long as necessary. Dr. Sholler showed us Mikko’s scans and she said they looked great! Tomorrow we will hear bone marrow results, which are expected to be great, get a little education, Mikko will receive his first dose of DFMO, and we will be on our way. Probably only part way home since it will be the afternoon before we leave, but who knows…part of me wants to bomb home. I’m missing Michael and Jeffrey like crazy.
We went back to the hotel, checked back in, hauled our belongings back upstairs and just hung out tonight. It was a long day. We were at the hospital from around 9 until 4:30 and worth every minute of it!
Thanks for keeping our little hero in your prayers. More tomorrow
Love, Hope and Blessings,
Picture 1: Mikko after his IV placement
Picture 2: Mikko with Dr. Sholler