Please register to walk with our Sammy's Superheroes team for the 2014 CureSearch Walk in Omaha!! (link below to register)
Our very lovely Miss Nebraska will be a special guest!! We will wear our BLUE Sammy shirts. If you need to order, you can get them on-line at www.sammyssuperheroes.org.
Registration / Check-in 7:45am
Opening Ceremony / Walk 8:00am - 10:00am
Village Pointe Shopping Center (Map)
168th and West Dodge Road Omaha, NE 68118
It had to be Fed Ex'd from Canada! It arrived at 11:30am. It had to be thawed and then quality checked. They actually started it at 3:00pm. There is only this one infusion and then we wait for the level of radiation to come down to a safe level before he can leave the hospital. There were actually 10 hospital staff in the room as we started this process…. a little overwhelming for all of us!
The room he is in is lead-lined on all sides and has two lead-lined doors. Everything is covered in plastic and paper to protect from radiation. I included several photos, since many people are interested in seeing this process.
Sam had a catheter placed this morning, as radiation is secreted in the urine and they don't want it to sit in his bladder. Then there is a lead-lined box where his urine is kept. Every 8 hours, we have to pump it out directly to the toilet. Also, because of the radiation exposure, Chris and I are responsible for nearly all the care-giving. We have to wear dosimeters (to track our radiation exposure), gowns, gloves and booties to enter the room. Today we will be able to spend less than an hour in the room.
This is so hard on us, but our sweet boy is doing great. In fact, they just came to get me because Sam was yelling for me. All worried, I was asking him what was wrong over the intercom system. He didn't answer after several times and they decided to open the door to check on him. He looked up and said, "oh, yeah, mom? Can I have a red popsicle please?" Geez!! Silly nut, scared me!
Thank you for your continued prayers and support of our little buddy through this next round of treatment. We ❤️ Sammy's Superheroes!
So, here's the scoop. We got the blood makers we needed!! YAY!!!!!!! This opens up treatment options, specifically another round of MIBG therapy at some point. Sammy was excited and hilarious this morning. When the doctors were doing rounds, there were about 10 people in the room and Sammy said to them all, "Who wants a treat??" in this silly sing-song voice. It sounded like he was talking to his puppy. Cracked us up. So he gave each of them a piece of candy.
We were discharged from the hospital about 8pm and when we got back to the hotel, Margie was waiting for him. He was excited to see her of course and she brought him treats too. A giant Hershey's kiss, a Hershey's bear and a Hershey's lego semi-truck. Do you see a theme here? He told me yesterday that she is his best friend in Chicago. So sweet.
We will head for home tomorrow. Sammy's platelet count has dropped from 210,000 to 55,000 in two days, so we need to go to clinic Friday morning to check in and check counts. They do a transfusion if it drops below 20,000. We are anxious to see Anisa and Dr. Coulter after this big week!!
Thank you for praying us through this one!! We accomplished everything we needed to and received some good news. Even though it was exhausting, it was a successful week.
We started the day with an ultrasound. This is a long story that I am going to try to make short… We talked with Dr. Cohn a few weeks ago about doing a biopsy of the mass by Sammy's clavicle to recheck his ALK status. In discussion with the surgeon and radiologist, Dr. Cohn told us that they wanted to re-evaluate that mass by ultrasound. The reason for this is that they had another patient who went into surgery to try to remove a "tumor" from a similar location and found out that it was actually an enlarged thymus gland and not a tumor. Because of this recent experience, they wanted to look more closely at this spot of Sammy's. Final decision from the team of doctors is this: there is no tumor by his clavicle, he too, has an enlarged thymus gland. This is awesome news, because this is the spot that had increased in size during our last round of testing. The doctors are submitting a case study regarding this, because, both Sammy and the other child almost underwent unnecessary treatment because of this gland! Most doctors don't think of this, because the thymus gland is rarely seen in children his age.
While we are so happy for this news, Sammy still has quite a bit of disease. It does give us hope though, that we can still decrease his disease through other treatments.
We did the stem cell harvest today and will continue that tomorrow. It went well, other than Sammy being quite uncomfortable with the pheresis catheter in his neck. We do not have any numbers yet to know how successful the collection was. We should know more in the morning. As always, Sammy was a trooper and basically didn't move from 10:30am until almost 8:00pm. We were sad that Chris went home today, but happy that Grammy and Grandpa came to stay and will drive home with us whenever we are discharged.
Near the end of today's collection, Sammy did have a slight fever (that resolved on it's own), but, because he has had so much "activity" with his lines, they are drawing cultures to make sure he doesn't have an infection in one of his lines. We got to end our day with a great visit from Aunt Lori and cousins Will and Ben. There was an awesome magician who came to visit and it was a great distraction for Sammy, we all know how much he loves magic!!
Thank you for your prayers. You are amazing. We love Sammy's Superheroes.
We have been busy trying to make decisions about the next steps of treatment. We are on waiting lists for two clinical trials, one involving t-cells (killer cells) at Baylor and the other one is an anti-body study. We have also been preparing to do radiation on Sammy's tummy and clavicle area.
As we have been discussing all of this, we realized that because Sammy has used up all of the stem cells we originally harvested, that right now is our best chance to try to harvest stem cells again. Because he has had a lot of therapy, this may be difficult to do, but we will be hopeful.
We started Neupogen injections at a higher dose than normal on Friday to prepare his body for the harvest. We will also be starting another drug called Mozobil tonight that will hopefully also help him to produce stem cells.
Sammy will be admitted to Comer Children's Hospital this morning to place his pheresis catheter for the stem cell harvest. This is a larger central line. He also needs to have his port replaced. (We had a little bit of an emergency earlier this week, when his port didn't work!!) They will also swap out his g-tube for a g-button today in surgery.
They will start stem cell collection tomorrow morning, which is about a 6 hour procedure. We will try to collect for up to 4 days and hopefully we will get enough stem cells to open up some treatment options.
Please pray for an easy day of procedures and for Sammy's stem cells (blood makers, as he calls them) to mobilize and multiply!!
Thank you Sammy's Superheroes!!
When we initially spoke with Dr. Cohn after Sammy’s scans on Wednesday, she said things looked largely stable. When you look at the MIBG scan, it doesn’t appear to have any major differences, but she said we would wait for the final reports from radiology.
On Thursday, we met with Dr. Cohn. She said that the CT showed the lymph node under his clavicle grew from 2.1 cm x 1.0 cm to 3.4 cm x 1.6 cm. The radiology report also shows a few additional areas of bone involvement in the pelvis and femurs on the MIBG scan. It’s not a drastic change, but chemo is obviously not working. Up until this point, Sammy’s disease was considered refractory (limited response or no response) but “stable,” now it is considered “progression.” Progression of disease changes the options for clinical trials. There are several trials open for refractory or relapsed disease, but when there is growth, that changes some things. In addition, bone marrow results are still positive for Neuroblastoma, 1% on one side and 30% on the other.
Dr. Cohn’s initial suggestion is to try some localized radiation to his clavicle area and to the residual tumor/lymph nodes in his tummy around the area where his primary tumor had been. We have not tried this yet, and localized radiation could potentially shrink these areas. We also put him on the waiting list for a NANT clinical trial that combines a drug called Lenalidomide with anti-body therapy.
For right now, we are going to process this information and just take a little time. We have an appointment scheduled with Dr. Coulter tomorrow. We know he will give us additional perspective and guidance.
We cherish your support, kindness and prayers. Thank you for standing by us through this journey. We <3 Sammy’s Superheroes.
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