Hi Everyone,
This move has been crazy. We finally finished up and 2 days later Ty and I went to NY. The flights were rough in several ways besides just turbulence. 

The extra day helped with the exhaustion factor. We were at Ronald McDonald House and they had a "spotlight" child of the week. A sweet little almost 4yr old got to decide the entire day of meals. The taco bar was the only part of the day we were there to enjoy. The Ronald McDonald House is no longer at compasity because they had to evict 15 families, who were there over 20 months after completing treatment. 

Ty had bone marrow biopsies done again. He will get more in December. Nurse Alexa has been with him for every procedure at MSK and has done all but 1 placement of his IVs since 2022. He gets along with her but found it strange that she sounded normal speaking except for saying "W" her accent comes out on every word with a W in it. So she introduced Ty to Vhitteny. 

We headed out extra early for the airport. To allow extra time for us to get to our gate. Ty was having a harder time because he refused all pain medication at the hospital. At one point he was given a mint flavored tylenol and will not do that again. Not sure why mint was chosen at that point. There was a shortage of beta-glucan. So we left with only 2 bottles of it. Our flight was delayed due to weather by over 2hrs and an extra 25mins because a pilot from Jet Blur "parked his plane blocking all access to the gate. Once back in Denver, we had a wheelchair on both sides guess who didn't get one in Denver after landing 2hrs later than expected. Someone else took it and going from Concorde C is a long way. We found him a wheelchair and waited for 30mins for a transporter that never showed. This was not an easy trek to make with a wheelchair a carryon suitcase or backpacks without a space underneath the chair to put some of the items. 

Ty had scans on May 30 and 31. We got results back on June 4th. His MRI and MIBG look amazing. Ty has been on only "preventative" treatment for 14 months. He has been considered in remission for the same amount of time. Everyone is thrilled with where Ty is pertaining to neuroblastoma 

The rest of the Beta-glucan was delivered and the schedule for it was wrong so we have to adjust by a few days. He will start on Weds and end on Tuesdays. 

Alright, Ty's liver has been inflamed and his thyroid is a little sluggish. They will watch the thyroid for now and he hasn't had the weight fluctuations like last year. This is being called compensated hypothyroidism. This is actually what I had before it was misdiagnosed and therefore treated which made it worse. It is suspected to be caused from the high iron levels in his body from all the blood products. The high iron is causing the liver issues as well. 

The high iron was put on the back burner until the neuroblastoma was taken care of. The treatment of this is theraputic phlebotomy or really blood letting. The normal iron levels are around 100 but Ty's level is at almost 5000, five thousand, so he will be giving back blood 30 to 40 times to bring the iron level down. During this he will get saline to replace what is taken. So 110-112 MLS will be taken, the same amount of saline will go in and it will be done 3 times each appointment. The first appointment will be June 13th @9:30am. Unfortunately, since Ty is "underage" to give blood it will just be discarded. Ty has O+ blood which could help so many others, especially those who are anemic. 

Ty is finding humor in having to give blood back because of all the blood products he received over the past 4yrs. We will be going to the Infusion center at the hospital to do this blood letting and as long as his hemoglobin is above 12, it will be done. There is a specialized MRI that will be done when his next scans are due. It will be added in with the brain MRI. They will need to change the MRI to detect where the iron has settled in his body. Ty will be doing this therapeutic phlebotomy over the course of a year, at least twice a month possibly once a week depending on hos he tolerates it. Thankfully, Ty will be able to spend time with Posey, Lemon, Kristan, Kara and Hannah. So the pokes will be easier on him. 

An appointment with Dr Hadley needs to be made just to keep him in the loop and so he can also monitor Ty's digestive system during all of the changes. An extra safety measure. 

We will be going back to NY at the end of July. In August we have a lot of things going on. We will be going to Universal Orlando for 7 days. Ty is  finally getting his Make-A-Wish. 

We are still settling in and are slowly getting use to the changes. We are feeling safe in our neighborhood, the cats are exploring more and even going outside. For memorial day we were invited next door for burgers and hotdogs. We are in a friendly area. 

Our new address is
610 Stampede Dr 
Lochbuie, CO 80603-5795

Thank you so much for continuing to read about Ty's journey. Please keep us in your prayers as Ty faces a new type of treatment. Ty's favorite part of the new house is the ice maker and water dispenser because he can get it himself. This kid is ice crazy but he is becoming more independent and is learning new things daily. I think that we will try going to the lake soon.