Settling in

Tyler and Michelle are settling into being at home. Since coming home, the insurance company now has to approve each medication and medical equipment. Some of these are being denied or delayed, so most of Michelle's day is spent on the phone fighting with insurance companies to get approvals. When she's not doing that, she is administering all of Tyler's medications, which is an around the clock job. It is very stressful, so please pray for continued strength for Michelle.

They have a huge support team in the family, as you already know. The family is helping to pick up prescriptions, stop in for visits, bring meals, stay the night with them for an extra set of hands, etc. Please also pray for them that they would have renewed strength and not grow weary in doing good for their loved ones. 

Tyler has been having a lot of pain in his shoulder, back and legs. They weren't able to get his air mattress bed until just the other night. Hopefully that, as well as an increase in his methadone, will get him much more comfortable. Please pray for Tyler's pain to decrease and that he would be able to rest and be comfortable.

They are still traveling to Ann Arbor once a week for chemo. The comfort care team there has made sure to reserve Tyler a bed while he undergoes his chemo treatments, which is so helpful because Tyler is in a lot of pain if he sits up for more than an hour in his chair. While some of the administration at a huge hospital like that is frustrating, it's nice to see the small things they do to put the patient first.

When Tyler isn't in too much pain, he has been up for taking little wheelchair rides, with family, around his neighborhood. I love to hear when he's having a better day and able to get out and enjoy a bit of sunshine and fresh air.

We appreciate your continued support, care and prayers.

"Never, ever ever ever ever give up!" - Winston Churchill

Back Home

Michelle and Ty have had a stressful week so far. They were able to go home last night, but Ty spiked a fever again so back to the hospital they went this morning. Thankfully, he was able to come home again this afternoon. I'm sure it's taking a lot out of them, though. Please pray that Tyler would not get another fever and that they would be able to get some rest. Thank you!

Prayers please

Tyler had to go back to the hospital last night because he was running a fever. 

The fever has come down some and they are running blood work to see what's going on. 

Thanks for your prayers!!

There's no place like home

Tyler was able to go home late last night! The wrong mattress was delivered for his bed, so he's uncomfortable in it right now. Please pray that Michelle will be able to get the air mattress pushed through insurance approvals and delivered quickly.

What a journey, 284 days in the hospital...284 days of his mom sleeping in a chair by his side (which I'm sure she'll continue, but at least in her own living room). I pray they will settle back into home quickly. Pray that they will be comfortable and at peace at home. Pray for Michelle as she becomes his main care-giver. She needs strength and energy and great wisdom. Thank you!

Going Home

The past few weeks have been filled with ups and downs. Tyler had a very rough weekend, with lots of pain, but that seems to have come back under control.

A few weeks ago, they started putting a plan in place to get Tyler home, where he can be more comfortable. I haven't mentioned it, until now, because plans are ever changing for Ty. But yesterday, we had a family meeting and they have set Tyler's go home date for THIS Thursday! Of course, I have to throw out there that this is barring any major hiccups that may happen over the next few days.

It seems like a complete whirlwind is in effect now. Lots of preparations are being made by the family to get the house ready...wheelchair ramps installed, hospital bed and other medical supplies ordered, cleaning, sanitizing, etc. Even more preparations are going on at the hospital. Michelle has been training to do all of the care-giving. She knows how to work his IVs, give his medication through the j-tube, flush lines, drain tubes, practice getting Tyler in and out of the car, etc. Backups for Michelle are being trained this week now too. There is also lots of stuff to pack up and get back home, after having lived in the Ronald McDonald house and hospital room for the last 9 months.

It's all overwhelming and exhausting, to be honest. There have been a lot of mixed emotions leading up to this decision. Lots of talks with Tyler on what he wants and where he would be most comfortable. But, all in all, yesterday it seemed as though Tyler, Michelle, and the rest of "Team Tyler" are ready, physically and emotionally, for the transition to get home.

A visiting nurse will come daily, for a few hours, until Michelle is completely comfortable with the routine and giving all the meds and such. Michelle lives within 5 minutes of her parents, her sister Cheri and Aunt Cindy...and her other sisters, Patty and Tammy, are within 15 minutes. So, help is right around the corner which is a huge comfort. The plan, for now, is to continue to do the chemo as an out-patient. This will require Michelle to bring Tyler to Ann Arbor weekly for the treatments. The first trial run for that will be Monday.

We greatly appreciate your prayers for Tyler and Michelle, and the rest of the team, during this transition.

New Chemo

Thank you for all of your prayers for Tyler. The results of the biopsy showed that Tyler still has immature cells in his tumors. Meaning, the current chemo regimen isn't working. The cancer is still spreading. It took the doctors a couple of weeks to come up with a new treatment plan, but finally over the weekend, they decided on a new chemo treatment. This chemo is known for being tough on the organs, so they are going to start with 75% of the normal dose because of Tyler's stomach, kidney and liver issues.

He is scared and that is heartbreaking. He was hoping to start Monday, but they started the chemo yesterday. He was already feeling very nauseous and sweating profusely while undergoing the new treatment. He is also having a lot of pain in his left shoulder. The tumor that is on his neck has affected the blood supply to that area and it is causing a lot of pain. They are working on managing his overall pain, but particularly in that shoulder area.

After nearly 9 months of hospitalization, Tyler still has fight left in him. Michelle has a lot of fight left in her too. Please pray for their continued strength, physically and emotionally. Pray for Tyler as he undergoes these new treatments and their side effects. Pray that this cancer would stop spreading. Pray that his organs would be protected from this chemo. Above all else, pray that God's will would be done in, and through, Tyler's life. Thank you!

An update from Friday

Tyler's Aunt Cheri (Michelle's sister) posted this on Facebook over the weekend. I thought I would repost to the blog for those of you that missed it.
.................................................................................................................................................................
Wow!! I had a great day with Tyler today. We went outside for an hour, he was feeding the chipmunks. As you can see Tyler couldn't reach so his mom let the chipmunk crawl on her so he could feed him. Just amazing. I haven't seen Tyler smile so much or laugh in awhile. But the chipmunk jumped on Michelle's back. Ty laughed so hard. Then we went and all got smoothies. Came back to Ty's room watched his favorite movie which we had over-nighted. Then watched a funny comedy that Michelle about peed her pants. Ty loved that his mom was laughing. Have to say how amazing Tyler and Michelle are. I had a great day with them today. Haven't had many good days lately, but today Ty talked my ear off. And I loved every minute of it.

 ................................................................................................................................................................

Praying for more days like these...more smiles, more laughs, more conversations...better days!!!