Tyler’s Journey…

Looks like we’re on target for discharge tomorrow!  Tyler’s ANC was 190 today (200 is the get-out-of-jail-free card).  Today he is focusing on consuming enough fluids and food in order to be sent home without IV nutrition.  He’s still not very hungry, but is very motivated! This is the second time Tyler’s counts recovered earlier than expected, despite […]

Tyler made it home!  The discharge took much longer than expected since this was his first time going home with a prescription of chemo (sorafenib).  The pharmacy was confused about the dosing, then our insurance company required a pre-authorization which wasn’t ready yet.  But we’re home, and that’s all that matters!!! Ty goes back to […]

Tyler went to the Hopkins Outpatient Clinic today to have his labs drawn and get checked out.  All looks well!  He did not need any platelets or red cells as his levels were good.  His ANC is 996.  He usually goes right back into the hospital for his next chemo course when he hits 1000, […]

A magical day!  Tyler woke up refreshed and we headed to church, joined by Michelle and TJ – how wonderful to sit together as a family and worship the Lord on Christmas Day!  Being with our larger church family was also such a blessing – this was only the third time I’ve been able to attend since all […]

Still doing great!  Tyler has gained a few pounds since coming home – still a long way to go, but we’re thrilled with his progress.  He is feeling stronger each day.  He’s been sleeping very well, which is such a blessing and change from the terrible sleeps he has had since September.  We are absolutely […]

Tyler’s Facebook status on the last day of 2011: “It’s been an incredible year.” Yes it has, Tyler.  Yes it has.

Tyler is still loving his time at home – we ALL are!  Tomorrow and Friday he faces some of the drudgery of medical follow up back at Hopkins again.  Thursday’s appointments include diagnostic lab studies, a sinus CT scan, a chest x-ray, pulmonary function testing, echocardiogram and EKG.  We will have to run to 4 different […]

Passing on a wonderful email message we got from Tyler’s doctor regarding the testing he had last week: I just wanted to let you know that Ty’s repeat echocardiogram looked good, with  normal function of the pumping chambers of his heart (ventricles). And even more  good news, his minimal residual disease in his bone marrow […]

Yesterday Tyler and I went to Clinic while Ron and his sister took down the Christmas decorations.  That means this season I got out of my two least favorite activities of the year – decorating the house and taking down the decorations!   Thank you to my wonderful Santa’s helpers! Tyler had a repeat pulmonary function […]

Tyler was admitted as planned on 1/17/12.  He started his first preparative chemo, Busulfan, that evening.  The plan is to get this every six hours for four days, then move to the second chemo, Cytoxin.  Busulfan’s main side effect is seizures, so Ty’s on Dilantin to prevent them.  He’s having no bad side effects so far and is […]

This morning Tyler had his last dose of Busulfan and his first dose of Cytoxan.  The chemo finally caught up with him, and he hasn’t been able to keep anything down today.  He feels absolutely miserable.  For the next 3 days he’ll get only the Cytoxan.  Please pray for him as his symptoms finally hit.

Still no improvement on the nausea – it is relentless this time around.  Throwing up provides no relief, only pain from his pulled muscles, and the 5 different medications they are trying aren’t helping him.  Please pray that he can get some sleep tonight as an escape from this.  Two more days of this chemo.

After 2 hours of sleep last night, Tyler woke up having a bad reaction to the latest anti-nausea medication they were trying.  The good news is the medicine took care of his nausea; the bad news is he suffered terribly from the reaction until he finally fell asleep at 7:30 this morning. I am thrilled to report that […]

Please be praying that everything comes together today and tomorrow for Tyler’s transplant.  We don’t know the exact timing of anything since the collection is happening in Europe, and the stem cells then have to be flown to Maryland, delivered to Hopkins and treated in the Hopkins lab before making it up to Ty’s hospital room.  It will likely happen […]

Tyler’s donor cells will be arriving on a later flight and won’t be here until after 9:30 PM.  The Hopkins lab then needs about two hours to remove the red cells.  So the earliest it will arrive in his room is about 11:30 tonight.  The transfusion itself will take up to 4 hours.  For the […]