Hanging out after the MIBG scan

Scans snuck up on us quickly this time. The anxiety was still there, but not as bad as in the past. I don’t know if this is due to our  boys’ hectic schedules keeping us preoccupied or due to the words of encouragement Dr. Rawwas shared with us at John’s last appointment…but scans didn’t weigh as heavily on our minds.

We headed up to Children’s Minneapolis on Wednesday afternoon. The hearing test had been cancelled at the last minute and that left John with just the injection of the MIBG scan. Once again he was such a brave boy about the pokes and IV. Jon and I can’t say enough about the technicians in radiology. They are always so nice and we’ve been there enough they know John well and he easily engages in conversation with them. John was scheduled for a CT scan the next day, but since he hadn’t eaten in 3 hours and they had an opening, they suggested we do it then (Wednesday). This would allow John to eat Thursday morning and to have just the 45 minute MIBG scan and then his appointment with Dr. Rawwas. Once the CT scan was done we were on our way back home.

Thursday morning we once again headed back up to Children’s. When we were checking in at the Welcome Desk “Dude” from the Star Studio stopped by to visit with us. It is always fun to see the Dude. You can’t help but smile when he is in your presence. John and I fast-walked raced to radiology (everything is a competition) and when we got there we were told John’s appointment would be 15 – 20 minutes late. More fast-walking….back to Star Studio to watch a little of Dude’s televised TV show. Fast- walked back to radiology and they were ready for us.

It is always the same routine: John picks out a movie to watch once the scan passes his head and he can turn it, he hops up on the table, a wedge is placed between his feet, his feet are taped together, the technician places his arms and head how they need to be, the scanner part of the machine is lowered so it sits almost touching his nose, I position my chair next to John – but with my back to the screen that displays his body as it is being scanned….and then it is time for the scan to begin.

I had decided that I was not going to look at the screen this time and I had even asked that the screen be turned off. Unintentionally it was left on. I had brought a book along to keep my mind busy, but at the very end I turned and peaked. To my very untrained eye it looked like a normal scan and I texted Jon my diagnosis. (He is always with us in spirit, but much elsewhere on the hospital grounds. We deal with scan day in our own way. If I need him, I know I can get him.)

Next we headed to lab for more blood draws and to hand over John’s first morning pee. We were then off to the Star Cafe for a little lunch before meeting with Dr. Rawwas for the results.

While eating lunch one of John’s nurses, Deb, from the 7th floor was walking through and stopped by to talk. Deb was one of the very first nurses we had during John’s diagnosis and first hospital stay (Yesterday was the 2 year anniversary of bringing John home from that first hospital stay that lasted 20 days.) and she spent hours with us during those days educating us on our new normal and the care that would be required of us. It had been almost a year since we’ve seen her and of course I had to get a little teary-eyed. So much emotion…We are forever grateful to all of John’s nurses for they lovingly cared for our little guy through the darkest of days. It is the nurses that were in the trenches of cancer treatment day in and day out…Those 7th floor nurses will always have a very special place in my heart.

Finally it was time for our appointment with Dr. Rawwas. Cindy, John’s nurse came in first and talked with us and then Dr. Rawwas came in and told us right away that John’s scans were great. Yay! John had his examination and his counts are all good (Urine won’t be back for a few days.)  I had a very good discussion with Dr. Rawwas. Jon is there listening, but he says little. Again….we deal in our own ways. Dr. Rawwas told us that we balance each other out.:)  12 weeks …and then scans again. Next regular appointment is May 22nd.

We got in the car to go home and I was hit with a wave of exhaustion. Obviously even if I try to tell myself I didn’t have scananxiety as much as before….it was there. These days are emotionally exhausting. Exhausting….but also exhilarating. There is such a sense of relief with the good news.  I know that we are so very fortunate for John to being doing so well. We are blessed beyond words.

Life has been hectic and normal, which we are so grateful for. These 3 boys keep us running. Here is a glimpse into some of what we have been doing. Of course there has also been lacrosse and hockey thrown into the mix as well.

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Thank you for your continued prayers for John!

Love, Hope and Blessings,

Shelly

This brown-eyed babe has taught his mom so much.

It is exactly 2 years to the day that we walked into Children’s Minneapolis hematology/Oncology specialty Clinic with a five year old boy who was in such pain he couldn’t walk. There had been complaints about knee pain here and there..the night before he had run around at Michael’s lacrosse game and the next morning all John could do was crawl. When we left for the clinic we packed a small bag and knew we weren’t coming home that night without even saying it to each other. We were too scared to say it. We didn’t come home that night. We there for the next 20 days.

This is when we first met Dr. Walrus/Rawwas and his/John’s nurse Cindy. This is when we learned we were in deep. I will never forget that appointment. My mom, Jon, John and me in that room. The examination, being told that something was felt near John’s spleen. Holding John with his legs wrapped around my waist and his little arms around my neck as I carried him from the clinic,across the skywalk and up to the 7th floor. Clinging to my son….numb and nauseous with fear.

Today…today is wonderful! Today I saw my son in his first grade classroom interacting with his friends. Today I saw him stick his tongue out at me in the hall of school. Today I took him to hockey and watched him skate his little heart out. Today I listened to him cheer on the Gophers Men’s basketball team and The MN WILD and read Z is for Zamboni.

Yes, John has fought hard along the way, shown strength beyond his years, and endured the unimaginable…but today I focus on the many blessings that have wrapped around our family like a blanket of love. The wonderful nurses, doctors…all of the Children’s staff. They educated us, listened to us, made us feel like we were part of their team, and cheered us on when we needed it most. Our families that dropped everything to walk this journey with us. Our friends and neighbors, our colleagues, the Hastings schools, the hockey and lacrosse clubs,Our Saviors and Pastor Doug,  acquaintances and even strangers, Team John shirts, Mikko bracelets, The beauty school, the donations, Mini-sticks for Mikko, Light the Lamp for Mikko, the gifts, the cards, the meals….our amazing community! All of you pulled us through and gave us the strength and courage to keep on keeping on. We are blessed to have your support and cheering our little guy on. We are forever grateful.

John is doing so well, but his journey with Neuroblastoma isn’t over and we still would like your prayers. Please keep John in your prayers. Prayers for NED (No Evidence of Disease) to stay put and those cancer cells to stay away. Prayers for scans that are around the corner at the end of April, prayers for no or minimal late-term effects. Prayers for John Joseph to continue to thrive!

Two years ago I never dreamed today would be like this.  Today is a gift.

Love, Hope and Blessings,

Shelly

Last Friday Jon and I took Mikko to his monthly appointment at Children’s for his blood draw, urine tests and physical exam. This appointment was with Dr. Rawwas. This time his blood and urine samples were handled upstairs in the clinic. There was a new guy (to us) drawing John’s blood and dealing with us for this part. I ‘m pretty sure he thinks I’m nuts after all the reminders and questions I was throwing at him. (Do you know some of this blood needs to be on ice? Do you know some goes to Michigan and some stays here. Same with the urine…some stays here…It was taken at 7:15 this morning…It needs a label on it…are you sure you drew enough blood because in the past I thought there were several more tubes…and on and on and on). I wouldn’t be surprised if next time he sent us down to the lab.

When Dr. Rawwas came in he had asked us if there have been any more complaints about leg pain. Nope, not a word. He examined John and then we talked a little more about his thinning hair. I had read on a Neuroblastoma support site about Dr. Sholler (The doctor we saw in Michigan.) suggesting Melatonin and Zinc help with this. We talked for a while about dosages and agreed to give it a try.(I had also discussed this with our contact in Michigan, but didn’t want to start John on it until we talked with Dr. Rawwas about it.)

Then Dr. Rawwas took us by surprise by what he said next. I wish we could remember it better, but both John and I were rather dumbfounded by his unexpected comments. It was something like…Dr. Rawwas wanted us to know that based on how John responded so well to his treatment that he is confident (not sure if that was the exact wording) that he will not relapse AND he smiled. This was HUGE for us to hear and see. Of course both of us had to well up with that happy news.

I debated whether to share this as I know there are no guarantees in life, especially life with cancer. I also know there have been children who have successfully completed the COG protocol for Neuroblastoma and have relapsed. But I also know that Dr. Rawwas would not say anything that he didn’t believe and his words of confidence lifted our burden of worry  a bit. His comments on Friday were a gift to Jon and I,  allowing us to lower our guards just a little and breathe a little deeper…to live each and every day as the gift it truly is….pushing the worry further behind.

Of course we will always worry to some degree. If not about relapse, then about the possible long-term side effects from the drugs that rid John’s body of his stage IV Neuroblastoma. One day at a time…we will keep on keeping on.

We are almost 2 years out from John’s diagnosis on April 6, 2012. It’s crazy to think of the life we’ve led for the past 2 YEARS!

Many adults think of Michael as a quiet kid, keeping his thoughts to himself. Both he and I are night owls and it is late at night that we have some of our best discussions. It usually happens as he comes up out of the basement around 11:30 or 12. This happened last Thursday and it is a conversation I will remember for  a long time…forever. It all started with my talking about getting ready for John’s doctor’s appointment the next day. Michael always wants to know what kind of appointment and what is going to be done. Then the questions and comments from Michael started:

He told me that John’s cancer had been very difficult for him. Right then and there I had to FIGHT tears because I knew if I cried the conversation would be over in a flash. I listened to him and I won’t share that part of our talk, but man it tugged at my heart. He then asked me what was the most difficult thing for me post John’s diagnosis. I answered and he answered. (Remember it is Michael leading this entire conversation.). Were there ever times during John’s diagnosis/treatment that I  thought he was going to die. Ugh…again we talked and talked for a long time.

It was a good conversation and I am so thankful that Michael feels comfortable enough to talk with me as he does, but it was a reminder to me how cancer turns the entire family inside out and upside down. It has touched  us all and left a mark on each and every one of us in different ways. Looking back there are things I’d do differently. Most importantly I would find a way to be more present for my big guys. I also wish we all would have went to counseling to help us deal with the chaos our lives were thrust into. Hindsight…right?!

This post has taken me FOREVER to write tonight. When I would stay up until 2 or 3 in the morning I had much better luck writing. The house was quiet and I was alone with my thoughts…able to put a few sentences together. It has been extremely difficult to find this time before 2 in the morning. Tonight I put John in bed, took a shower and crawled into bed to write/ type while the guys watched the WILD game. The dog was with me and stressing out from all the yelling/cheering coming from the living room. She was constantly trying to get on my lap (65 pound lab!) Jon came in and wanted to know what I was writing and he was bugging me. I told him it is far to late in my journaling to censor me. Later Jeffrey did basically a cannonball onto my bed and wanted to know what was up. Jon came back in to bug. Jeffrey came back in. Dog was still trying to get on my lap again. Jon was bugging again.

It is midnight and Michael just came up from the basement to share that all Scandinavian countries are working towards passing legislation to ban homework. Too bad he lives in the U.S. and has a chemistry test tomorrow, a paper rewrite that will take a minimum of 45 minutes(I’m told) and math. I have also been informed that I have no idea how busy he is….waaaay busier than me. 🙂

Happy April 1st!

Love, Hope and Blessings,

Shelly