Thursday, January 17, 2008

Update from Home

Tyler is doing good. He slept soundly until early afternoon after his first night in his own bed. For the most part his pain is under control. The home nurse (she comes twice a day) will check all of his blood work again today. His neuropathy is still a problem, but the other side effects have greatly diminished. He will actually have school today!

The only real scare we had was when his IV alarm went off about 4:00 in the morning. I was in a little bit of a panic, because I was the one that had hooked up his IV's the night before - my very first time. I disconnected and reconnected everything with the IV's, pump, and TPN. Nothing stopped the alarm. I kept thinking, "What have I done to my son?". Finally I discovered the pump batteries had gone bad, which was setting off the alarm. At least I now have my training in emergency TPN / IV set up.

We are entering week 9 of this battle with cancer, and attention is being focused now on Tyler's abdomen. This ugly disease has a tendency around week 10 to suddenly build a resistance to chemo and explode aggressively through the entire body, including the central nervous system, within 48 hours. If this were to happen it would begin in the abdomen, the original starting point of the cancer. At that point options become very limited.

Once we get a little past the 10th week, the chances of this threat diminishe greatly. Over the next several months the chances of a relapse remain high, but the cancer would usually relapse in a new location and would not move as quickly. At that point a bone marrow and stem cell transplant become the best course of action.

After 6 months of remission, the chances of a relapse drop significantly, and 12 months of remission is considered "cured". Our goal and prayer is remission by April 7th, Tyler's 16th birthday. Then 6 straight months of remission by October, and celebrating his 12 full months of complete remission and "cure" by his 17th birthday. Please join us in prayers for our goal.

Please also keep in your prayers our friends who are also in this battle:

Rob just had his 3rd bone marrow transplant. The surgery went well, but VOD (Venous Occlusion Disease) has attacked his liver. It is potentially very serious, and Children's is trying a new drug, one they have never used before, to treat the VOD. Rob is currently in intensive care.

Harley was at John Hopkins for a stem cell transplant. Unfortunately the cancer has returned. They are being sent home to spend time together as a family. There are no remaining medical options. Please pray for them.

Brett just competed his bone marrow transplant after his Burkitt's returned. Considering all he has been through, he is doing relatively well.

Sinjin is back in today for some scans. There seems to be some concern that his Burkitt's has returned.

Kylee, Stef, Nicolas, Olivia, and Jana are continuing in their fight, with all the "normal" ups and downs as they all continue toward complete victory.



dina bornhorst said...

I am SO GLAD no clinic today -- Stay home as long as possible!

Dealing with IV's and pump alarms in the wee hours of the morning -- oh boy, talk about on-the-job training!

You guys WILL beat this thing -- Chip away at it piece by piece -- baby steps --

We pray for you daily,
The Bornhorsts

Anonymous said...

T-shirt idea for Tyler....
Tylers Logo "Fight to Win" on the front and his sports # with T. Alfriend on the back.

J5 Nurse

Anonymous said...

Please consider Reiki to help him deal with pain, etc. Research it!