Happier Day in Cincinnati...Feeling Sick in McKinney

Here are a few pics of our happy little guy from this evening. He sat up and played for quite awile while talking on skype. Note that the toy of choice here is an emesis basin--only in a hospital!

We hope to get out of here on Sunday or Monday, and will spend some time at the home of some friends while the doctors here continue to monitor Nathanael's condition. He does need more red blood cells tonight, so please pray that he would not have a bad reaction to the cells.

Jamison and Brad are still feeling sick. I guess it's better that we're apart for now.

Please pray for two of our friends who are in the transplant process as well: L. B. and J. M. Both need protection from illness, rest, and to respond appropriately to their medications. May the Lord continue to bless them, just as He blesses so many others through them.

Here's to a restful, quiet weekend for everyone!

Bree

"It's not fair..." and that's a good thing!

From Bree, in the hospital in Cincinnati:

Thanks for the continued prayers! And thank you for the food, supplies, and borrowed clothes as well! Nathanael is doing MUCH better than he was just a day ago, and that is reflected in both his lab values and his behavior. He is in general much happier than he was. However, he is still on very high doses of steriods, which makes him agitated, and makes sleep difficult. I had just obtained permission to give him some Benadryl this afternoon because he had not yet taken a nap, but by the time I got back from heating up my lunch he had finally conked out and was sleeping soundly. Of course, that's after I covered his crib like a bird cage and left the room. When it comes to fighting sleep he is one determined little boy!

It's funny, but in a way I feel at home here. This place has been a significant part of our lives (well, my life and Nathanael's anyway) for the past seven months, and in some ways we feel pretty comfortable here. Strange, I know. But hopefully most of you will never have to understand.

One of the things I like about being here (or even at Children's Dallas) is the support I feel from staff members and other families. From the social workers and child life specialists, to the nurse-practitioners and other patient-care staff, almost everyone is supportive and encouraging in some way. In fact I told our lactation nurse yesterday that I appreciated her role as my cheerleader through some of the most difficult days. Even those close to the transplant process admit that they have a hard time understanding what it must be like to go through, but even the sensitivity displayed by that admission is helpful.

Two things are especially challenging for me right now: (1) I miss Jamison like crazy, and (2) I am heartbroken over how difficult this process has been for Brad. Though he is surrounded by loving friends and family he is still far from Nathanael and I, and can't be here to see us or help with the day-to-day care. He is much more involved in the financial and logistical details of this treatment and its impact on our family, and is aware of those costs (many of which are unknown to me). He is also playing the role of single-father to Jamison again, and I know that his respect for those who deal with this type of family situation long-term has grown tremendously through our experience.

Part of the challenge right now is to balance the needs of our boys with our responsibility to protect them. Our doctors have been very clear with us that the biggest threat to Nathanael's health is other children, so when our boys are together we need to keep Jamison pretty sheltered. Though it looks overprotective to those around us, here are the rules we have worked out in conjunction with both teams of doctors:

Jamison and Nathanael should have minimal physical contact with each other. (I allow Jamison to touch and count Nathanael's toes, but I make sure his hands are clean, and still wipe Nathanael's toes afterwards as well.)

We can have healthy adults in our home, but may not have kids over.

Jamison can play with other healthy stay-at-home kids in their homes, and should change his clothes when he gets home. (We have been advised that he should not be around kids who go to school or daycare, as that increases the likelihood of his getting sick.) Our doctor in Dallas specifically mentioned that Jamison should avoid Sunday School, for at least as long as Nathanael is on steroids, which suppress his (less than 10% of normal) immune system.

We should avoid public places as much as possible, including parks (we are grateful to have a great swingset on loan from friends in our backyard, so we can play there, as long as I keep Nathanael in the shade, as exposure to sun is dangerous for him), stores, the library.

One might ask, "Is this fair to Jamison?" and the answer, of course, is "no"...but then again my dad used to tell me all the time that life isn't fair. I didn't like that answer then, but now I'm convinced that it's an important fact of life. As a Christian I can appreciate not only that life, indeed, is not fair, but that I'm thankful that it's not. If we were to truly experience what we deserve (i.e. what is "fair") we would be apart from God - and all the gifts He so graciously gives - all the time. What we have "earned" with our rejection of Him and His ways is condemnation, and instead what He offers us is forgiveness and grace. So I have to remind myself on a regular basis that what is "fair" is not really what I want.

Our perception of fairness is another problem altogether. It is easy to look around and desire what we think someone else has - or what they actually have - instead of what we have, or where we are in life. However, if we believe that God created the whole universe, created us, and loves us, how can we complain that the life He has given us is not good enough? "Should the thing that was created say to the one who created it, “Why have you made me like this?” When a potter makes jars out of clay, doesn’t he have a right to use the same lump of clay to make one jar for decoration and another to throw garbage into?" (Romans 9:20b-21)

So we will continue to adapt our family life to fit the guidelines given to us by our medical teams, to protect the physical health and safety of our boys, and to provide for their emotional, social and spiritual growth as well. Please do pray for us in this, as it will require great creativity and perseverance. It could be another year or more before Nathanael's 10% of an immune system is up to 100%, and we will need wisdom for every step of the way.

It has been a long day, that dose of Benadryl we gave Nathanael about an hour ago has finally kicked in, and it's time for me to get some sleep...good night!

Back to Cincinnati - It was a short visit at home

From Brad:

Well, it was nice having Bree and Nathanael home for a couple of weeks before they had to go back to Cincinnati for who knows how long. If you sense some frustration, you have your finger on the pulse of our family.

It all started, literally, two days after Bree and Nathanael and Jamison got off a plane at the Collin County Regional Airport in McKinney on April 12th. We went down to Children's Medical Center of Dallas to get acquainted with the doctors and the nurses that would be managing Nathanael's care now that they were home. As a matter of routine, they drew blood for lab work in the morning and by the afternoon, a nurse handed me a printout with the results. Most of the numbers looked very good except for one, his platelets.

Platelets are what your body uses to clot a bleed. The number should be above 130,000. Nathanael's were 66,000. They were around that amount when he was born. They got below 10,000, I think, in the midst of his chemotherapy. Believe me, you don't even want to get a paper cut with platelets below 10,000. Since his day 100 labs (100 days after the transplant on Nov. 23) his platelets hadn't been below 150,000. So, 66 (which is how it reads on the printout) surprised us and I pointed it out to the nurse.

The medical team in Dallas consulted with the medical team in Cincinnati and labs were drawn again the next day. This time his platelets had dropped to 14,000. The next Monday they were still in the teens and his hemoglobin was low. Hemoglobin is what your body uses to transport oxygen from your lungs to wherever else it needs to go. His liver numbers were a little funny and his white blood count was through the roof, higher than it had ever been. The decision was made by both medical teams to bring Nathanael back to Cincinnati to draw labs and for observation.

Towards the end of the second week, things were looking up. His low numbers were rising and his high numbers were coming down, thanks to a drug that I'll talk about in a little bit, and it appeared as if the Cincinnati visit wouldn't last any longer than a week.

On Sunday morning, April 25th, Bree and Nathanael took off from McKinney in a plane the size of my foot. The past two times they've traveled, it was in one hop. This time it was three legs using three different planes, the second of which was built in 1958.

On Sunday evening around 5:00, I received a text from the pilot that Bree's phone had died and that Nathanael had vomited and his color was yellow, including the whites of his eyes. The plane, which was headed for the Blue Ash airport northeast of Cincinnati diverted to the city's municipal airfield where it was met by an ambulance and off to the hospital they went.

On my end it was a little nerve wracking. I was using a website to track the flight and for a little bit, the flight disappeared. All I knew was what I'd received from the pilot and so I called the hospital's main number. After saying that I was looking for my son who had been transported from Dallas, the woman on the other end of the line said, "Mr. Banks." It was comforting to know that the hospital was aware and that they were getting things in motion to provide the needed help.

That night we learned that Nathanael is dealing with Autoimmune Hemolytic Anemia. His body views his platelets and red blood cells as an invading enemy. Untreated, his red blood cells would be whittled down to nothing. They had told us in Dallas that he was dealing with some kind of antibody problem but we hadn't heard the name for it yet.

Apparently, it is not uncommon in bone marrow transplant patients, particularly transplant patients who have Wiskott Aldrich Syndrome, which is what Nathanael has. What's left of his old bone marrow is fighting his new bone marrow. It's like there's a UFC match in his body and the platelets and red blood cells are the casualties. What the doctors need to do is manage the consequences and help the new bone marrow win the fight. He can receive transfusions for when the numbers get too low. The procedure for that is straightforward but his condition makes it hard to find blood that matches. It takes about 12 hours to get blood that he can have. He also receives doses of Ritoxin which apparently kills the cells that form the antibodies against his new marrow.

The good news is that there's every reason to believe the new marrow will win this little fight. It's just that it could take weeks or even months. Priority #1 is to stabilize Nathanael so that his hemoglobin and platelets are at a safe level. Priority #2 is to arrive at a place where the doctors are satisfied that the treatment regimen is working. Once that happens, he can be transferred back to Dallas where the treatment can be continued. Again, this could take weeks or even longer.

So that's where we are today in this odyssey that began with Nathanael's birth on August 19th. Please pray that those two priorities will be quickly achieved and that Jamison somehow is able to understand why Mommy had to go away so soon after coming home.

In Christ
Brad

Home for 2 weeks...now going back for a short visit

It's been good to be home - I have even seen a few friends - but now Nathanael and I are headed back to Cincinnati for a week of testing and check-ups. With his recent diagnosis of platelet and red blood cell auto-antibodies he needs to be seen by the doctors who have seen him every week for the past six months to make sure that nothing is missed. While his numbers (platelets, red blood cells, hemoglobin) seem to be normalizing (i.e. his retoxin treatments are helping) I still have some concerns about his stool and color (he skin has looked more yellowish than usual, and his bilirubin has been high). Since things can go awry so quickly with little ones, I'm a little anxious to have his doctors in Cincinnati run their own tests and do their own assessment of him.

Overall though we're adjusting pretty well to life at home. I still need to work on fitting a few more things into everyday life. We need to get Nathanael eating a variety of solid foods, not just squash and sweet potatoes, I need to get Jamison outside to play every day, but that means either leaving Nathanael in his bed and using a monitor outside, or setting up a way to keep him completely shaded from the sun (he likes to pull blankets off of his stroller!). Don't get me wrong, I'm NOT complaining! I'm so thankful to all be together, and I enjoy spending the days with both of my little boys.

Please keep praying for strength for Brad and I. The road ahead is still long. Nathanael has less than 10% of an immune system right now, and we could be living with LOTS of restrictions for all of us for another year or more. Again, I'm not complaining, as we are voluntarily submitting ourselves to the recommendations of our doctors...we just need to keep trusting God as we follow the best advice that they have to offer while finding solutions that work for our family.

Thank you for your prayers and support!
Bree

HOME home at last!

We're ALL HOME TOGETHER now!!! Still unpacking, getting used to new routines, new medical providers, etc., but thankful to be here. I hope to post some "visit guidelines" soon, as I'd love to have some visitors since we're not getting out much.

Please pray for Nathanael, as his platelets are low, and he's now on a new medication that will slow his recovery a little. He's also on steroids again...ugh.

Pray that Jamison would stay well, and would be free of neuroses about hand-washing. :)

Pray for Brad and I: for sanity, organization, good health, wisdom about medical decisions (which central line to remove, whether or not to put in a new NG tube for meds - we've been without it for several days now) and that we would continue to trust God and teach our boys to do the same.

More later...but keep on praying!

CVC Crises Averted

If you read the earlier post you might have noticed that it referred to a single event, while this title uses the plural. That's NOT a typo. His central line was repaired early this morning, and then the repair failed to hold, so a second repair was needed. ARGH!

Thank you for your prayers. All went well, and his line has been repaired. Hopefully there will not be another infection, this repair will hold, and they'll get us out of the hospital soon.

Praise God with us for protecting our little boy, please pray for continued protection for all of us (Brad and Jamison are at the zoo today with friends), and pray that we would respond to all these circumstances in a way that brings glory too God.

Oh, and thanks to ALL of you for standing with us in prayer, helping in other ways, etc. You are all gifts from God to us, as we could most certainly not handle this without you!

CVC Emergency

Please pray for Nathanael: one of his central lines popped like a balloon just now (5:00am) while the nurse was trying to draw morning labs, and we're waiting for someone to come repair it. We really don't need another line infection (this is the other side). UGH!

Oh, and we're both exhausted and need sleep.

I just want to go home!

(CVC stands for "central venous catheter")