Tuesday, September 30, 2014

Doing Well

So far Ava is doing really well on this chemo! At least, she seems otherwise fine and is playing a lot and cheerfully. We continue to pray for no side effects but rejoice in the fact that she is able to play during this time.

Ava will stay in the hospital one more night tonight, only because her chemo will finish around 10pm. Tomorrow her chemo will finish at 8pm so they will go home for the night and then return the following day. The timing/cycle is such that each day Ava will finish her chemo 2 hours earlier than the previous day, so she should be done around 4pm on Friday. Woohoo!

Thank you so much for your prayers!

Monday, September 29, 2014

Last Round of Chemo?

Ava started her 5-day treatment of chemo today. This may be her last round of chemo before heading out to Seattle. She's getting nelarabine, etoposide and cyclophosphamide this week. You may remember that nelarabine has the potential to cause some serious nervous system side effects. Please pray that Ava would display none of them!

Their original plan was to keep Ava at Lurie's the whole week during chemo. However, if she does well through tomorrow, they will consider letting her get chemo on an outpatient basis for the remainder of the week! That would be great - even though she would need to be at Lurie's for a full 8 hrs, the prospect of going home to sleep in her own bed at night is definitely appealing!

Thank you for your continued prayers!

Feeling Better

Thank you for your prayers, the Lee family is all doing much better post-virus, and it looks like Mike didn't get the full brunt of it in the end. Thanks again for your prayers!

Lots of logistical things and questions to ask/decisions to make in the next weeks. Ava goes in for chemo tomorrow. We'll keep you updated.

Friday, September 26, 2014

Enterovirus and Next Steps

Ava was at the ER earlier this evening to get nebulizer treatments for a couple of hours. Both girls have enterovirus (the ED68 that's hitting asthmatic kids pretty hard). Ava & Gwen are on steroids and nebulizers to manage their symptoms. Please pray for them, and also for Mike & Esther: Esther is pretty sick and Mike is just starting to have symptoms. Thanks in advance for your prayers.

Looking ahead, Seattle is eager to have Ava out as soon as possible for transplant (e.g., as soon as yesterday). Obviously, this is challenging on a practical level and they recognize that. And as Mike mentioned in his most recent post, the doctors feel there is benefit for Ava to have another round of chemo before transplant. This is because:

1) Ava hasn't had chemo in a little while. It may be another couple of weeks before she can even get out to Seattle, so they don't want to leave her cancer "unchecked" for too long.

2) Ava's residual disease shows mainly T-cell leukemia, and there is a drug she hasn't had yet that specifically targets T-cells. (The drug in discussion is nelarabine).

3) If this new chemo regimen can drive down Ava's MRD any further (to MRD negative even!), that would put her in a much better position going into transplant.

The downside? Nelarabine has some pretty serious side effects (like all chemo). But nelarabine can cause problems in the nervous system such as seizures, tingling/numbness, paralysis, even brain damage (though these are "less common"). Still, the small percentage makes little difference to anyone who actually experiences any of these side effects. On the other hand, the potential to attack the cancer with greater efficacy outweighs the risks here if it means Ava's life.

At this point, we don't know for sure if this is the drug (among others) that they will try on Ava this next round. Ava is scheduled to go in on Monday to begin a 5-day course of chemo, but the actual drug regimen is unknown to us right now. I guess we will find that out on Monday.

It is possible that the Lee family will be out in Seattle in a couple of weeks. We'll have to see what the doctors say about Ava's next chemo regimen (and how she responds), and when they feel Ava would really need to be in Seattle. Please pray that the enterovirus will not hinder her on this trajectory, or anyone else in the Lee family. Of course, we rest in God's sovereignty and great wisdom. His ways are higher than our ways. Please pray for the Lee family to remain in that place of "rest" even amidst very practical busyness. So many things happening and all rather quickly.

They are thankful for each one of you and covet your prayers!

Wednesday, September 24, 2014

A very real post about nothing really

It's been non-stop action since we were told Ava needed a transplant and we headed out to visit the best transplant centers we could find. After Ava's bone marrow biopsy last Wednesday, we piled into the car and drove to Ohio. Then a few days later, we found our way to Minnesota. Each consult was balanced with grim realities and hopeful outcomes as we were laden with more info than a first year med student. :)

It's sobering to hear statistics about my child's case. Especially, you know, because my girl is special to me, a one-of-a-kind gem. She's not a number, an interesting case, or, God forbid, a statistic. But the reality is that Ava is in very real danger of a relapse if we do not move quickly. Yet, how can we get our whole lives in Chicago neatly packed up in a few short days? How do we tell Ava to say goodbye to her room, her house, her friends, her school, her church, her dog, her aunts and uncles and cousins, knowing that she is flying full fledged into the most precarious situation she has ever known?

This requires supernatural strength like we've never had to showcase before. Our hearts are made of steel as we give Pippin away for a year. Our smiles defy logic as we cheer Ava along as if our trip to Seattle is a fantastic adventure. The longing for our past lives is hidden behind calm and collected posts and conversations about what the future holds.

Yet, the truth is, our hands tremble and betray us as we type out list after list of "things to do", our hearts waver between the choices we have made so far,  and our smiles are traded in for heart-stopping sobs as we ponder the unfathomable.

We want our girl happy; we want our girl healed; we want our family complete.

But life is not about what we want. It's about something bigger than us. And so we lay down our frantic fears and put up our shaky hands and expect greater things, more beautiful things. Because, after all, it's not about this life anyway.

Consultation in Minnesota

Esther and I spent a good amount of time after yesterday's consultation discussing which doctor and hospital to move forward with.  We ended up sticking with our original plan, which is to bring Ava to Seattle for the cord blood transplant.  

We got home from Minneapolis today just in time to get the kids settled and our plan was to head out to our small group Bible study.  But then Gwen started showing some very alarming symptoms: respiratory distress, vomiting, fever.  We've been keeping the girls separate, and if Gwen gets any worse, we'll take her to Lutheran General.  

The consultation at the University of Minnesota was incredibly helpful.  To be able to consult with the high risk leukemia specialist ten days earlier than planned was a big encouragement.  We were so eager to hear about their unique protocol for doing transplants for those who are MRD positive, ever since we heard last Saturday that Ava's leukemia levels remained the same inside her bone marrow.

We ended up concluding that this special protocol being offered was not for Ava.  But the doctor actually did not recommend his protocol for Ava.  Instead, he recommended one more cycle of a different chemo drug before heading for transplant.  This was very eye-opening for us, because we had been thoroughly convinced that any further delay in transplant would be too risky.  But to summarize his insight: do we put the risk on the front end (by delaying transplant in order to lower the MRD levels even further with chemo), or risk it at the back end (by having a higher chance for relapse due to doing the transplant with positive MRD)?

He thinks that there's a drug that Ava hasn't tried before, which might lower the amount of leukemia in her body.  Lowering the level from .03 to .001 is critical to having a successful transplant that does not end in relapse.  (A second transplant due to relapse is often unsuccessful.)  So we have benefited greatly from this visit, and are currently working out a way to get to Seattle for the transplant as soon as possible, but try to fit in a 5-day course of this chemotherapy drug before heading out.

For Esther and I, the decision to stick with Seattle comes down to one key factor which we believe gives Ava the best opportunity to have long term disease free survival. Ava is eligible for the stem cell expansion program in Seattle, which is not being offered anywhere else.  It was designed to make cord blood transplants safer.  But it's still in the early phases of development, and can only be offered through a randomized selection process.  The doctor herself actually does not know what the percentages are for being selected.

Although the dice is rolled and it seems we are leaving the results to chance, Esther and I believe that God is not in the least limited by what may seem random to us.  We have been asking that God be involved in this computerized algorithm the same way He is in all things: more purposeful and prepared than we could ever fathom.  So we regard Seattle's stem cell expansion program as one way that plays favorably into Ava's upcoming transplant procedure.  It's a chance that we don't want to take for granted, and what we believe is part of God's plan for Ava.  

If she doesn't get selected for it, going to Seattle involves FAR MORE than just that added treatment.  We are already beginning to be hit (in a very good way) with the world of provision and care that we know will change our lives in deeply beneficial ways.  We are so blessed by those who have already reached out to us from Washington, and for friends and family who have been connecting us to such great people there.

As we prepare to go, we have so many people to thank.  Our church (NSCCC), family (the Lee's), relatives (from all over), friends (old and new), Ava and Gwen's school (Pritchett Elementary) - we have been sent off with absolutely nothing to worry about other than being by Ava's side the whole way through.  We are SO thankful for each of you.

Please keep praying for us:

- for Gwen's health
- for Ava to be selected for the stem cell expansion
- for wisdom regarding one last cycle of a new chemotherapy 

If we choose to go with it, that 1) it would drive down the MRD even further BEFORE the transplant, and 2) all common and unlikely effects would be avoided, most notably any neurological (brain) damage.  

Tuesday, September 23, 2014

On the Road

Thank you for all of your prayers! The Lee family is on the road back from MN after their consult yesterday. I think Mike will post about the visit sometime after they get home later tonight. Thank you for your patience, prayers, and eager concern and love for the Lee family.

Sunday, September 21, 2014

New Development

As you know, Mike & Esther are doing their best to "plan ahead" without really having much knowledge about what the future holds (or much say in outcomes along the way), while remaining as flexible as possible.

A new development has put Minnesota back on the grid as a potential place for transplant. Originally the doctor there wouldn't be available for consult for another two weeks. But after Ava's biopsy results came back yesterday, Ava's oncologist reached out to him and he got back to Mike & Esther last night! So the Lee family is on the road to MN right now and to meet with this renowned doctor sometime tomorrow (or possibly Tuesday).

You may wonder why they are still considering MN. While Seattle would still be a great place for Ava to have her transplant, this doctor in MN is very well respected in his field (even in Seattle), and MN would be in-network under their current insurance. More importantly, he has/is doing some studies on bone marrow transplants in patients who are still MRD positive (like Ava), and may have valuable input on her care. The Lee family also has some support network of family & friends in MN that will be a great blessing to them.

So, the location of Ava's transplant is back under consideration, but a final decision will need to be made in the next day or two. We praise God for opening up the doors for this consultation, and trust Him to shed light on their next steps. Thank you for praying the same. We will keep you posted.

Saturday, September 20, 2014

MRD Results

We just found out the MRD results. They still stand at 0.03% which means this round of chemo was not effective in eliminating the cancer. We are moving quickly toward transplant. Please pray for guidance, logistics, and, most of all, peace.

Thank you for praying with us. We are so grateful to all of our friends, family, and community that have continually surrounded us with love and kindness.

The transplant process will likely be the hardest thing Ava will have to endure so far. We pray that her strong spirit will continue to fight on and make us all proud...if it's even possible to be any more proud than we already are.

Transferring to Seattle

Thank you for your prayers and messages regarding Ava's biopsy on Wednesday. We do not have the results for the biopsy, and I don't know how likely it is that we'll hear this weekend.

However, things are moving despite waiting for biopsy results. Mike & Esther have decided to transfer Ava's care to the Seattle Cancer Care Alliance.

After meeting with doctors in Seattle and Cincinnati, the message they heard was the same: time is of the essence, and Ava is in imminent need of a transplant. The fact that she did not reach remission in the first month, two months, three months of treatment is a big deal – this shows that her cancer is either resistant or aggressive (or a combination of the two). This means there is a much higher chance of relapse. Although the cancer seems somewhat suppressed by the chemo for the time being, the fact that the residual disease remains (and really hasn't changed much in the last few months) means that the cancer could come back at some point. If it does, it will likely be much more fierce and aggressive, and even more difficult to treat.

As you know, the goal is to get Ava into remission (MRD negative). Once in remission, there would normally be two possible paths of treatment: 1) continue with chemo and hope that chemo itself will be adequate to keep Ava in remission, or 2) get a bone marrow transplant. Given Ava’s unique case of having biphenotypic leukemia, plus her severe allergies/responses to various chemo agents thus far and lack of remission, the transplant docs all agree that going the route of chemo alone is not an option for Ava; she needs a transplant. It is preferable for Ava to be MRD negative before transplant, since any residual disease could render the transplant ineffective. However, the consensus is that the best option is to do transplant, with or without remission first.

Meeting with both Seattle and Cincinnati helped Mike & Esther realize the urgent need for transplant, something they didn’t realize was so critical and time-sensitive. It’s been a bit of a shock to be thrust into the imminence of it all when they thought chemo alone was a viable route. Yet God has guided their steps and helped them to make decisions quickly, but not rashly. They desire God’s plans above any of their own desires, and recognize His sovereignty even over these past 6 months of chemo. He is the source of any and all healing, so our trust lies in the Creator of all things more than any renowned physician or earthly timeline. Still, they are grateful to have the experience and knowledge of these different doctors whose input helped them come to a decision about Ava’s care. Although Minnesota was originally a place of consideration, the doctor there isn’t available for consult for another 2 weeks… too long to wait before figuring out Ava’s care. Seattle has the longest history of transplants and probably the most experience with cord blood transplants (which is what they would do for Ava, especially in the absence of a perfect match). Mike & Esther also have some support network in Seattle that will no doubt be a great blessing and help to them while they are there. Thus, they have decided on Seattle.

There is a lot to be done in the next few weeks. The first and most important is getting their insurance switched so that they could be in a network that includes Seattle. Please pray for success and covering of all such details.

There are numerous other logistics that come with this decision; picking up and moving for an unspecified amount of time is not an easy thing. Seattle docs say that Ava would need to stay for a minimum of 3 months for transplant, but any complications, infections or other setbacks could easily extend their stay to be much longer. This means they’ll also spend Thanksgiving and Christmas away from home, and Esther will probably deliver the baby in Seattle as well (she is due at the end of January). That’s not to mention the pre-transplant preparation that needs to take place for Ava: four days of total body irradiation (twice a day) in an effort to wipe out any/all residual disease. This will no doubt be extremely hard on Ava’s body, in addition to rendering her infertile. There are a whole host of other concerns and what-if’s, but as we are told in Matthew, “Therefore, do not worry about tomorrow, for each day has enough trouble of its own.” They are seeking and trusting God for each step, trying to plan ahead yet take things one at a time so as not to be overwhelmed. It is impossible for our finite minds to address and plan for so many unknowns; we trust in the wisdom of our Heavenly Father. Please pray for God's peace, grace, provision and evident presence in the coming weeks and months! Your support and prayers are invaluable.

In the meantime, Ava may get chemo next week, but the biopsy results will determine if the chemo regimen will stay the same or change. We will let you know when we hear.

Tuesday, September 16, 2014

Boy, Oh Boy

This news is long overdue but...I am pregnant and it's a boy! In a few short months (January 30th), we will be welcoming our first son into the world.

It's quite a thought that while we are experiencing quite possibly the worst time in our lives with our beautiful first-born teetering between life and death, there is another life growing inside of me. And, boy, is this kid a fighter. Every few moments he gives me a knock to remind me that he's still there and that I'd better pay attention. Here is a picture the technician caught of him. We joke that he is on his knees praying for Ava but maybe he just has gas? :)

I have to say that these past few weeks have felt light and refreshing. Maybe it's the fact that we've been home long enough to build up our sense of normalcy, or maybe it's the peals of laughter I hear from the room as the girls play with one another, or maybe it's the turn of the weather indicating a new season has arrived. Guys, I am on my face praying for a new season in our lives. One that is punctuated with God's very real presence in every one of the harsh moments of reality.

This cooler weather has brought on such a strong sense of nostalgia. Although it is only September, it feels like Thanksgiving and Christmas are right around the corner. We don't know what tomorrow holds, let alone the next few months, but my heart is so full these days with the anticipation of celebrating and giving thanks to God for another year of life and love. And even though we may not be "home" for these holidays, I am satisfied that we got to experience the weather and, with that, the memories of all the past winter seasons with our family. 

As Mike already highlighted in a few posts back, we are gearing up for an imminent transplant. We really wanted to beat this cancer with chemo but Ava has fought courageously the last 7 months without being able to reach remission. This residual disease shows that either the cancer is resistant or it is is aggressive. So even if we end up with an MRD negative result at our next biopsy, her chance for relapse is high. (I will leave all the technicalities and specifics for Patty to explain. She has a gift for making it easy to understand.)

Heading into this next phase of treatment is gut-wrenching. We wrestle every day with decisions that we will have to live with for a lifetime. But we are reassured that each choice we have made so far was so infused with love for Ava that there will always be confidence that God has lead us to and through every point of Ava's cancer journey. The conditioning for a transplant will render Ava infertile and will leave behind a host of side effects that may range from uncomfortable to devastating. As a parent, how do you choose which poison to subject your child to in hopes of a cure? 

And yet, with all that we've seen in the past few months, we still haven't explored the depths of despair and grief that is there when a child is lost to cancer. But, God, how I understand the brokenness of this world when I see all the little bald heads poking out from under the covers of hospital beds, when I hear the shrieks of pain and confusion in the halls of the 17th floor, and when I see the heartache etched deep into every wrinkle on a parent of a newly diagnosed child. 

I haven't been able to muster up the energy to do much but I want to help bring awareness to pediatric cancer and to the suffering of children and parents alike that are called to go through it. Please join me in remembering and praying for the families that have been rocked by these diseases. I pray that our faith only grows stronger, our love for God deeper, and our desire for heaven becomes more of a reality than our lives on earth.

Ava's biopsy is scheduled for this Wednesday and with this knowledge, we trust God to guide our next steps. At this time, we are looking at several hospitals to do Ava's transplant. Seattle is our top choice but due to some insurance issues, we are also looking at Minnesota and Ohio. Would you continue to keep us in prayer, that God would point us to the best place for transplant and that we would continue to trust in all of his provisions for our family as we step into our next journey of faith?

"May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope." Romans 15:13

Monday, September 15, 2014

Labs Today

Ava will have some labs drawn today (Monday). Her ANC was still up last week (2000), so we'll see where she's at since her last methotrexate. We'll let you know what Ava's lab results are, which will give us an idea of when she might have her next bone marrow biopsy.

In the meantime, please pray for protection against infection, especially the enterovirus EV-D68 that's been going around Chicago/Midwest, causing more severe respiratory issues in children with asthma. Both Ava and Gwen have asthma. We pray for all children battling cancer and/or asthma to be protected.

Thank you! 

Friday, September 5, 2014

Discharged! (with photos)

Ava has been cleared for discharge today, hooray! Thank you for your prayers.

Here are some photos from this last hospital stay, for those of you not on Facebook:
Day 1: Settling in for another round of high-dose methotrexate
Day 2: Waiting

Day 3 (from Esther):

Celebrity Day at the hospital! Hilary Duff saw her from across the room and told her what a beautiful smile Ava had. Then after spending some time with her she said, "You are the sweetest girl. It was a treat for me to meet you today!" Also, Shaw and Kruger played with Ava today. Ava said it was the best day ever!

Day 3: Celebrity Day

We love seeing Ava's infectious smile and continue to pray for complete healing, MRD negative. Thank you!

Wednesday, September 3, 2014

Chemo Resumes

Ava's counts have gone back up, so she'll be admitted to Lurie's this morning to get another round of methotrexate. As usual, she will stay in the hospital until the drug clears her system and then she can go home. The plan is to get a bone marrow biopsy after this round. And as you know, the goal is to be MRD negative! Thank you for your prayers.

Tuesday, September 2, 2014

Trip to Seattle

Chemo or Transplant?  Chemo or Transplant?  We've spent a lot of time this past month going back and forth between the two, ever since they became somewhat equally viable treatment options.  But we've tried to carry the weight of this decision in all the wrong ways.  Have you ever lifted weights or worked out by focusing on just one muscle group while completely excluding other ones that deserved attention?  What makes us do that sort of thing? Why is it so easy to take that route?  We let the importance of one area of life completely take over, leaving us with little energy in areas where it is also needed.

I'm so thankful for what my cousin said to me.  "Mike, that's not the type of decision that rests on your shoulders.  When it comes time to decide, it will already be made for you.  And whatever choices that you do need to make, you are doing so with nothing but complete love for your daughter. So you can do no wrong."

That conversation was the start to feeling a whole lot lighter, and each step has finally seemed to gain a foothold amidst all the motions of chaos we have been experiencing.  What kept that good trend going was last week's trip to Seattle, which helped remove a few more of those 45-LBS weights off of the one side of my neck.  (That's where all my tension seems to go.)  

Going to the Seattle Cancer Care Alliance (SCCA) meant taking a couple days away from my family, and I found myself developing a different habit of going back and forth.  Every time I picked up my phone, I would spend time going from my wallpaper photo: (Ava at around 2 yrs old)

Staring at this picture for awhile, I'd then flip over to a newer picture that I display on one of the 4x4 panels of my android phone: (Ava and Gwen eating roasted marshmallows during our recent Light House Family Retreat)

Going back and forth between these two pictures...  I just kept doing this throughout my entire trip, usually smiling, sometimes getting choked up, oftentimes zooming in on these glorious faces that would own my attention and make me forget what I had initially grabbed the phone for.

But as I headed into the consultation appointment with one of the SCCA's transplant doctors, I entered the room having known only of the grim details involved in a transplant. Up to this point, Ava had been a cancer patient with a possible need for bone marrow transplant.  Our learning of BMTs progressed very slowly, and I had allowed only pure negativity to influence my thoughts regarding a transplant.  There were doctors who had tried before to explain it to us.  But in our eyes, they weren't proposing a life-saving procedure, or working endless hours trying to improve upon this breakthrough in medicine.  To us, they were individuals draped in darkness who worked in the field of hopelessness.  Nothing anyone could say about a BMT would make a decision for transplant a positive one.  I would find myself thinking, as I have many times before, "We are in such a good place right now.  Let's not go and spoil it with something too drastic."  

There's never a wrong moment to tell you that I owe you my deepest and sincerest gratitude for being with us at any and every point during this journey.  You have given us some of life's greatest moments this past year while fighting Ava's leukemia.  In the midst of her failing health, I have often thought, "We are in such a good place right now."  The power of your encouragement has often moved us safely beyond the harm of our trials.  Thank you, ALL, so much.

When aiming my sights to Seattle, I came across a doctor's profile that, among many other lists of interests and accomplishments, was: 1) her concentration on helping children without a perfect bone marrow match, 2) dealing with children of mixed ethnicities, and 3) pioneering a breakthrough that would address the problem of stem cell shortage during the patient's recovery process.  These were all things that I felt spoke very directly to Ava's greatest challenges.  Could a phone call and an e-mail to her be the start of overturning some of the ominous boulders that had blurred our vision of what a BMT is all about?

Even though this doctor was at the end of her two-month season of patient care (much of the year for her, I believe, is devoted to advancing her research), she made sure that not only could we meet for a consultation, but that she would oversee Ava's roughly 4-month period of transplant care.  By the time we were face to face at SCCA, and with Esther on speaker phone, we had over a page of questions to go through.  But when the conversation was nearly over, we didn't have to ask the doctor a single one of them, because I saw that she had thoroughly answered all of it through her own desire to share with us what we needed to know.

There's a lot of technical information to back up what I took away from this visit.  That if transplant is to occur, I have great hope that Ava will have a successful one.  This stands in stark contrast to where I was previously.  Before, there was only great fear.  Today, I feel like we have been repositioned in this battle.  We have the opportunity of experiencing a medical procedure that may one day help save many lives.  In a BMT, there is a 26 day period of recovery that causes this procedure to be so dangerous.  During that time when the body is without a functioning immune system, the the slightest of health complications pose a serious threat.  But an extra infusion of stem cells can be used to reduce this critical period of vulnerability by providing a momentary defense system.  It's like a temporary shield until the new ingrafted bone marrow can do its work. These much needed stem cells can be made available because of a new program to expand or grow them right inside of a laboratory.  For a BMT patient who receives expanded stem cells, his or her recovery time may be reduced to just 19 days, which is a huge achievement.  The hope is that these results can one day be used to help serve a wide range of situations where one's health has been severely wiped out due to internal or even external hazards.  Since these methods have now been moved into the proving grounds, it's a procedure that Ava could be added on to her transplant by randomized selection.  Aside from the chance to receiving expanded stem cells during recovery, what is also reassuring is to know that a cord blood transplant would be the best kind of BMT for Ava.  Having no perfectly matched donor, the risks would be far too great, especially with her history of severe allergies.  But she needs a cord blood donation to be just a 4 out of 6 match, which I was told is pretty much a sure thing.  For these and many other reasons, our view of the transplant procedure has been dramatically altered.

But in addition to that hope, I have also spent the ensuing days with a deep heaviness mixed in.  From the consultation, it became unavoidably clear that the intense conditioning process in a transplant brings about the certainty of infertility and lifelong, periodic screenings for secondary cancers and the risk of gradual failure to other organ systems.  In other words, a transplant will make it medically impossible for Ava to bear children, and she'll have to make regular visits to the hospital as though she were already in her late, "high-risk" 50s.  

So I'm back to this idea of going back and forth.  We are still not sure if and when to initiate the cord blood stem cell transplant.  We need so much prayer and for God to strengthen us with courage from the Holy Spirit.  We don't know why we were given this amazing privilege to serve as one of Ava's lines of defense.  But courage is needed to prolong chemotherapy, because we don't know if chemo alone is just prolonging a vengeful relapse that becomes even harder to deal with down the road.  Or if we have reached the end of chemo, then courage is needed to embrace the lifelong physical challenges that a life-saving transplant comes packaged together with.  So until any change takes place, we'll be swinging like a pendulum.  But we finally seem to be moving forward with more confidence these days, and we are presently hoping for the following developments:

1) by starting the cord blood donor search, we want to find at least two 4/6 matches (or better)

2) in reaching out to others who have fought pediatric biphenotypic leukemia, we hope to make one solid connection (or more)

3) to reach MRD negative at the next bone marrow test in about 2 weeks.

Again, we have not made the decision to go to Seattle just yet.  We still plan to visit Cincinnati Children's Hospital hopefully next week.  I've also heard that the University of Minnesota and Boston Children's Hospital are just as great.  But we're also learning to accept what our role as parents is, and to accept the limitations we have.  So Cincinnati will probably be the only other hospital we visit.

There are so many people to thank, and I know I would be unintentionally and badly dropping the ball.  It was awesome to stay with my Uncle Sam and Aunt Nancy in Kent.  It was great to reconnect, however briefly, with Caroline, Andy, and Joelle, and to know that we have them and many more of our sweetest friends and relatives in the Seattle area if we go to SCCA.  We thank a friend of Patty's, who rented a car for me so that I could get around Seattle more easily.  Thank you most of all to Esther and Patty, who have worked to keep our family's lifeline of support continuously fresh through this blog, through Facebook, and just the way they have made our family a magnet for your prayer and encouragement.

Also, we have greatly enjoyed all the cards, video recordings, recorded jokes, and more for Ava.  She recently got a Hello Kitty boom box for her birthday, and I thought it would be really sweet for her to receive personalized cd's from anyone who has songs or recordings that she would enjoy.  Ava has shown a high level of appreciation for one's honest efforts at expressing themselves through music.  I recently played a song for Ava that got a lot of criticism from virtually all circles of society, just to get her opinion on it.  It was Rebecca Black's song, "Friday," and Ava's comments were, "She did a GREAT job!"  We've been singing it ever since.

You are all God's best to us, and we have long been rejoicing in the love reflected in thousands of ways through the course of our recent difficulties.  Although we look forward to a distinct end to these trials, they now seem to come from a part of life that is more commonplace than we have ever been able to recognize.

"No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it." (1 Corinthians 10:13)

Thank you for standing with us.

Our Love to You All!