Houston we have a problem.....

At the airport in Houston.


Feeling snuggly in the hotel room---you have to love a fourteen year old boy who will still cozy up to you.


Jackson showing off my Christmas gift....I have no idea why it is in a museum in Houston, I guess for safekeeping, what with all the recent robberies and all.




Jackson and his buddy the terracotta warrior.

See how hard he works for you Mrs. Eilers!


We are home from Houston and it was good. Dr. McClain confirmed that Jackson has ND CNS LCH (neuro degenerative central nervous system langerhans cell histiocytosis). We knew he did, we wanted to hope he didn't, but we knew. Dr. McClain was able to see it on the MRI's we brought that were done this summer. It amazes me how 3 oncologists, two tumor boards and two neurologists looked at the same MRI and pronounced it "clean". I am not blaming or being critical at all, just emphasizing the point that we have specialists for a reason, a good life saving reason. After reviewing the MRI and giving Jax a brief exam he told us what we were in for... 12 months of chemotherapy which will be done 5 days in a row every month with about 3 weeks between these 5 day treatments. If the MRI isn't significantly changed at the end of 12 months then we will continue on for another 6 months of the same. Try not to focus on the 60 to 90 chemo treatments, but on the fact that there is hope! I was so afraid he would say what all the other oncologists have said, which is basically, there is a problem but we don't know of anything to do about it. The chemo regimen is called ara-c, the drug is cytarabine, and it is a tougher chemo than the one Jackson had at age 4. This one will most likely cause, fatigue, nausea, vomiting, headaches, fevers, and low white and red blood cell counts. Of the 8 patients he has used this therapy on, none have lost their hair and 5 have had improved nuero functioning! Pretty good odds to us. It's interesting to me that how we feel about situations can be so relative. If you had told me 2 years ago that we were going to endure at least 60 chemo treatments with a stronger drug that is able to pass the blood-brain barrier and enter his spinal fluid I would have freaked out. Now I am so happy that we can do this, so glad that Dr. McClain accidentally found ara-c is more effective at treating ND CNS LCH than the other therapies tried before. Jax did great, "relatively" speaking. When the Dr. was explaining the length of treatment and the number of them I glanced at Jax and he looked fine. When Dr. was explaining that he would need 4 or more spinal taps during this time period Jax looked fine. When he talked about the repeat MRI's and the BAER test, he looked fine. Then when he said since this drug severely effects your blood counts it will be too risky to play contact sports, like football during treatment.....Jax BURST into tears, sobbing heart wrenching tears. No football, made it real. No football, makes him sick. No football, means his reality is really a new reality for him. Fourteen years old doesn't see the big picture that we see--but does that matter? No, it doesn't. I ache for him over his grief. I know what's best, I know what a huge blessing this is for his future, but I ache because he does. He will be O.K. --he has done hard things before and he can do hard things again, he is amazing.

So many of you have asked what it is that Jax has, is it brain cancer, is it histiocytosis, is it central nervous system disease? If you could see me right now I am shrugging. It is (from what Michael and I heard from Dr. McClain) too many Lymphocytes which are normally good infection fighting cells. Just like with Histiocytosis the good guy cells got carried away, but this time it wasn't the histiocytes causing the havoc. I don't fully understand the part about the spinal fluid, I will ask with a clearer head when we have our appointments in Seattle. For now just know that he is sick and being treated with cancer drugs for something that is not cancer cells but the good cells play-acting like they are cancer cells. Did I make that hard enough or what?! Michael told Jax he could simply tell people he has a form of cancer, or he could tell people it's ND CNS LCH or he could tell them it KT LEI PPG (insert whatever letters you want)! Regardless it is extremely rare, extremely sneaky, and we are extremely lucky to have found some help.

The support in Royal is taking my breath away. Thank you for the calls, the meals, the cards, the childcare and especially the prayers. Thanks for loving us, and especially for loving and caring about Jackson. Many of you are asking what you can do for us, please keep him in your prayers, and heaven bless you all for blessing our lives so much. I am grateful for you ALL.