transplant update

We have returned home from a weekend away visiting our friends, who moved away from Lynn to direct a camp for girls...what a beautiful and fun Memorial Day weekend we had with them! It was so refreshing to leave the city behind for a weekend and work and play in acres of woods and grass.

I have been anxious to post all weekend and to share some AMAZING news. On Friday afternoon, Orilus' transplant fellow called with the final results of the tests from our two-year anniversary appointment at Jimmy Fund. In his words, Orilus is "free not only from sickle cell, but from all its effects."

The tests showed:
* that Orilus is making 100% of Jackson's blood
* that Orilus' body has fully adadpted to Jackson's blood, including taking on an allergy that Jackson had and becoming all sickle cell trait, and not diseased, blood
* that Orilus' previously-shriveled and non-functioning spleen has regenerated! The doctors who ran the test wrote the report not knowing that the spleen had barely existing previously, and noted that it was normal, and footnoted just one very small place that appears not to be functioning fully. WOW.

As Orilus' doctor commented, we are DONE with sickle cell disease, and DONE with transplant entirely. He recounted all the things that have healed in Orilus' body since transplant...a brain occlusion, an enlarged heart, a messed-up liver, a shriveled spleen, ongoing pain crises, a need for constant antibiotic, an automatic visit to the ER for fever...and ALL of these things are resolved. Orilus is medicine-free, pain-free, and WELL.

Friends, I can't really explain how this is truly more than we could ever have asked or imagined (as the Apostle Paul writes). Surely God has done so much for us! We had hoped that the sickle cell would be gone, but were cautioned that Orilus' organs were probably permanently damaged, and that transplant could prevent further damage, but not necessarily "heal" what was already done. And so this is MIRACULOUS news. Better than the doctor's anticipated, and WAY more than they even encouraged us to hope. Amazing.

Many of you may recall what a comfort Psalm 40 was to me during our long transplant year; it hung in our hospital room, and here at home. While for much of that time, the verses on being in NEED were most applicable, now verse 5 resonates:

5 Many, O LORD my God, are the wonders you have done. The things you planned for us no one can recount to you; were I to speak and tell of them, they would be too many to declare.

Thanks to a God of wonders.

thankful

So much good news in that last week!

Last Wednesday, I went to my doctoral interview at UMass Boston. I walked away from the interview feeling confirmed in my pursuit of that particular degree, at that particular place, in this particular time. I also felt an assurance that I had earned a place in the 2008 cohort...and yesterday, I received official word that this is the case! I'll begin my 3 1/2 years of classes this July with 2 courses offered over three full-time weeks. In the fall, I'll begin my academic year schedule of 2 evenings per week and one Saturday per month.

Last Thursday we completed academic evaluations for both Orilus and Jackson, a process we undergo every year to check in with their progress. Both boys are grade-ready, though they still lack significant background knowledge (obviously). We were pleased to see such great results on their tests...yet more evidence of how much they have grown since coming home with us nearly four years ago.

Last Friday Orilus and I spent a full day at Jimmy Fund and Children's Hospital. We're still waiting on results of some of his tests, but so far, all of the news is extraordinary. For the first time in his life, his blood labs are completely perfect! Some of you may remember how confusing his liver numbers were throughout his transplant, so often halting our progress...well, they were PERFECT last week. The doctors are amazed. And...we don't have to return to Jimmy Fund for ONE YEAR. Considering how often we used to visit there (and how we lived across the street at the hospital), this feels like quite a miracle.

This week promises to be full...the boys' chorus concert tonight, Jackson's "Biography Day" Thursday morning (he's dressing up as Paul Revere and presenting a biography poster), and the boys' Field Day on Friday (Dad's volunteering as a coach that day). Also, the boys are fully into their soccer season now, with games on Sunday afternoons. And piano lessons and soccer practice Thursday afternoons. But the school year is winding down...we are already anticipating a slower pace in a few weeks...and we are getting excited for summer (the boys already counting down the days).

happy anniversary to us...and news

Today is our two-year bone marrow transplant anniversary. Or, as we used to call it, the 2-year anniversary of "New Life Day." Since we went out for dinner yesterday on Mother's Day, we celebrated with a simple meal here at home...and homework...and an ongoing science fair project...and a Paul Revere project...you know, the usual fare. But all day yesterday I kept thinking, "Life is not usually this usual," and in fact, for so many moms this week, it's anything but. Yesterday during our house church we remembered my friend Kori in prayer, whose son Eddie is still recovering from his bone marrow transplant, though it was only days after Orilus'. And a colleague, who lost her daughter this year in a car accident. And another transplant family, whose precious little girl lost her fight before the holidays. On Saturday we spent the day with friends who are home now after a scary heart surgery for their infant son. We talked about a "theology of remembering," about living off paper plates and donated frozen food, about an inability to carry conversation, and medicines, and forgetting our children's birthdays while standing in a stupor at a pharmacy, about sleeplessness. I could relate to all these things, because I now belong to what I fondly refer to as the "club of the suffering." And I assured these parents that someday, they, too, would be thankful to belong. "The rain falls on the just and unjust," the Scriptures remark, and so we are not surprised by suffering...rather, it is the healing and the miracles that are surprises to us, and great gifts that interupt the usual patterns of heartache, grief, and loss. I am thankful for these gifts, and for a faith that teaches me that my God is (as we read in house church on Sunday), the God Who Sees. I took great comfort yesterday in knowing that He could see my suffering mom-friends. And I found great joy in the pleasure He must enjoy when He sees our family--healed, and still healing, and going about the mundane. So on our anniversary today, I pray, and I thank God for SEEING us.

I'm also thankful today that God is a God Who Protects. Friday there was a shooting outside of our high school and Jason was nearby when it occurred. I can't write many details here as there is an ongoing investigation, but Jason in his courage and his readiness to respond came very, very close to an armed gangster, and all I can say about this encounter is that I am so very, very grateful that God saw fit to protect him. Every morning we pray together as a family on the way to the school bus stop to drop off Orilus and Jackson, and on Friday, I realized after we had each prayed that we hadn't prayed for protection (usually I ask the Lord to bring us all home together at the end of each day, and I always mean it so seriously, because I know how quickly life can change, and how tenuous our existence and health can be). So I prayed again and asked. Sometimes God answers these requests, and sometimes He does not, and I am just glad that on Friday, He had mercy and grace on our family, and kept Jason (and all at the scene) from harm. What is most disturbing about Friday's incident is that it comes after a month or so of great unrest here in our city. All weekend I remembered this verse from the Scriptures: "Pray for the peace of the city. For if it prospers, you too shall prosper." I hope you will join me in praying for the peace of Lynn. We need shalom (healing, wholeness, restoration) here.

And finally, while I am giving thanks...I am thankful that late last week, I received (finally) word from UMass Boston that I am finalist for the doctoral program to which I applied there. On Wednesday of this week, at 3:15, I will be interviewing for a place in the EdD Leadership in Urban Education cohort. If God is a God Who Hears (and I know He is), then this is what I ask--for peace, and not panic, as I anticipate the interview.

On New Life Day, we are celebrating New Life in a variety of ways...for Orilus' health, for Jason's protection, and for the anticipation of new venues of service in Lynn. Happy New Life Day to us!