Health update...

Below is an update that I sent out via e-mail earlier this week on the health front. Since then I've had a few tough days. Even with all the pre-medication and precautions taken at the hospital the contrast from the CT Scan did indeed send me into yet another attack. We had to use the Epipen at home (injection of epinephrine). After the epipen I was still having a reaction so Ja rushed me over to my immunologist. He gave me a good dose of steroids and another injection of epinephrine. That evening I had some minor symptoms but nothing serious or life threatening.

This morning I woke up sick and have been fighting symptoms all day. According to the immunologist it is clear from the results of my tests and from my symptoms that the mast cell burden on my body is at a dangerous level and we need to get a more aggressive treatment plan together and fast. I don't know what that means exactly but he bumped up my appointment from May 11th to tomorrow at 1:30.
---------------------------------

Dearest Family,

Praise the Lord, we had the less difficult report from the oncologist yesterday! There has been no development of a secondary hemotological disease, like Leukemia, which was the concern. I do most certainly have Systemic Mastocytosis with a strong penetration (greater than 30%) of the mast cells in the bone marrow and some of the mast cells are atypical. This is a high penetration and means the disease has progressed strongly over the past eleven years. This, while it brings a flurry of other health and life challenges for us to face, does not bring with it the poor prognosis and immediate challenges that the doctors were bracing us for. The bone marrow does contain lymphoid infiltrate associated with the mast cell infiltrate. This potentially indicates an associated clonal hematopoietic disease but no evidence of it being so at this time. So in layman's terms - there is the potential of a serious blood disease developing in the future. Of course, this will have to be very closely monitored but for now we are Lymphoma, Leukemia and Cancer free!! I know this is a direct answer to prayer.

Here's what we have to face going forward: I need to become much more diligent to avoid attack triggers and even with the best of management I can expect to have bad days. The disease is progressive and at this time there is no cure. Yes, the attacks are scary and they are painful and the bad days are hard to function through but I feel that we are not alone in these struggles and that gives me a great deal of comfort and strength. I still have some testing go through to make sure there are no Lymph nodes in the organs and bones, but based on the bone marrow the doctor fully expects the findings to be normal. All testing should be wrapped up by next week and then we meet back with the doctor to get together a better suited treatment plan.

We are thrilled; we are thankful; we are humbled. Thankful that God choose to spare us from the toughest of diagnosis's and thankful for the flood of prayers for us. Ja and I could really feel the prayers. We could feel a peace at a time where it didn't make sense to feel peace. We felt a sense of hope in a time when doctors were trying to convince us not to. We are changed and I pray it is forever. It's like a light has been cast on our lives and we realized that our hopes and our desires were in all the wrong places. I believe that this disease is beautiful form of God's grace in our lives. Without it maybe we wouldn't have been lulled out of our false sense of security. Maybe our hopes would have remained where they shouldn't be - in each other, in Jason's career, in our children... in this life.

Father, please keep us shaken and teach us to love You more than we love anything else.

Romans 8:18-28
18I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. 19The creation waits in eager expectation for the sons of God to be revealed. 20For the creation was subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope 21that the creation itself will be liberated from its bondage to decay and brought into the glorious freedom of the children of God. 22We know that the whole creation has been groaning as in the pains of childbirth right up to the present time. 23Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption as sons, the redemption of our bodies. 24For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what he already has? 25But if we hope for what we do not yet have, we wait for it patiently. 26In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. 27And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will. 28And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

Again, thank you for the prayers and for reaching out.