Reality check...

Tuesday we took Claire to her Hematologist. We didn't get the news we were hoping for. Actually, we did find out that her hemoglobin numbers are still climbing, and that is great, but most likely that is because of all of the transfusions she received. We found out that she still has an extremely low reticulocyte count - meaning that her bone marrow is making very few (hardly any) red blood cells. We will go back on Monday for another blood draw to see if anything has changed. .

We have been flying through this process getting one piece of good news after another. I have had an incredible peace about everything. I just have this feeling that Claire is okay. I really thought we would walk in to Dr. Recht's office yesterday and be told she was totally fine. Instead I sort of feel like I've gotten the wind knocked out of my sails. It was a reality check. I am not saying that I have lost faith in her ability to be cured. I just know that we need to get back to the place where we were last week... fervently praying for her complete healing. I still won't be surprised if we walk in next week and find out that her reticulocyte numbers are through the roof. That is, after all, what our God can do.

So, where do we stand? We still don't know very much. We know that Claire's marrow isn't working, but we don't know what is causing that. It could be many things - a severe form of anemia, some weird virus that caused her marrow to temporarily shut down, or it could be something scarier that they just found too early to diagnose that normal way. We are still praying that this will correct itself fully and that she won't need any form of life-long treatment. Please join us as we pray for total healing.

Phil 4:4-7 "Rejoice in the Lord always. I will say it again: Rejoice!... Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

Merry Christmas...

We have so much to be thankful for... being together, at home, and next to our own tree barely scratches the surface. This, indeed, is a very special Christmas in the Brownlee home.

4:33 pm...

I just got a call from Dr. Recht - Claire's hematologist. Her cytogenetic tests came back today, and her cells are normal. There are no genetic issues that are causing her symptoms. This virtually eliminates one of the possible scary diagnoses - Myelodysplastic syndrome. More good news.

I also forgot to share two passage that I came across while reading last night and this morning. 
"I called on your name, O Lord, from the depths of the pit. You heard my plea: 'Do not close your ears to my cry for relief.' You came near when I called you and you said, 'Do not fear." ~Lamentations 3:56-57 & "I know that you can do all things; no plan of yours can be thwarted... My ears had heard of you but now my eyes have seen you." ~ from Job 42

No news...

We haven't heard any more from her doctors since yesterday, but we aren't necessarily expecting to. We are home, and loving it. Claire has more energy and spunk than any of us know what to do with. She seems 100% herself... such an answer to our prayers.

We know something in her bone marrow isn't working correctly, she has abnormal immature white cells and not enough immature red cells, but we don't know what that means. It could be caused by a disease, a virus, or her genetics... So, since there are so many unknowns still, I think we won't dive into the details of what she may or may not have. There are a few fairly scary diagnosis possibilities and a few that aren't so bad... and we would rather not drive ourselves (or any of you) crazy with worry. And there is a possibility that we might just never find out what happened. To be honest, we would be okay not knowing - or rather knowing that she was very sick and God healed her body. Our fervent prayer at this point is that Jesus will take her one more step and just heal her little body completely. We now wait for her doctors to get back to us and hope to know more on Tuesday.

Thanks again for your continued prayers. Like I said yesterday, she isn't out of the woods, and there is still much room for healing in her little body.

Don't forget to give blood... many of you have. Thank you so much!

Merry Christmas!

4:08 pm...

So, we are heading home. The "flow" test came back and there was no sign of leukemia! We got a lot of information from our doctor just now, and I will explain all of the what ifs as soon as I get a chance. Right now we have 7 possible diagnoses and are waiting for test results. We will know more when we come back to Doernbecher on Tuesday (just for a blood draw and regular appointment with Claire's hematologist). She is not out of the woods yet, but she doesn't have cancer! Her life is a wonderful testament to the amazing power of prayer. Thank you for your love and concern for us and our daughter. Though we do not wish these circumstances on anyone else, we do hope that someday we can repay the kindnesses we have been shown through this rather scary ordeal. We appreciate each and every one of you - and your continued prayers for Claire.

"Our God is so great, so strong and so mighty there's nothing our God cannot do!"

Why I give blood...

I have always given blood... I sort of like doing it. Maybe it was the cookies and juice, or because it gave me a chance to just lay still for a few minutes, or maybe it was knowing that I might be helping someone. Whatever the reason used to be, it has forever been changed in my mind. My daughter is thriving today because the blood of at least three strangers is pumping through her veins. Three people who decided to take an hour out of their busy lives and donate. Three people who helped save her life when I was helpless to do so myself.

Currently only 3 out of every 100 Americans donate blood. I know that some of you have reasons you cannot... pregnancy, illness, living out of the country, age, etc. What about the others? What about those of you who have been checking up on my Claire, wondering how to help. When was the last time you donated blood? For me, it was November 22, 2010... I am not eligible again until January 17. Claire will be 14 months old that day and I am going to celebrate by donating.

Will you do the same? Can I throw out a challenge for you? Will you go and give blood during this holiday season? Do it for Claire. For the other babies that will need blood today or tomorrow or next month. It is so easy... visit the Red Cross website to find a blood drive near you. The need is great, the supply is limited. If you haven't donated before, give it a try. It doesn't take a long time, it is relatively pain free, and you can save up to three lives with every pint you give.

Just do one thing for me. If you give, let me know by leaving a comment here or dropping me an email. And don't do it just once. Go back in 56 days to save three more lives. And if you are one of those who can't donate, recruit someone who can. Nearly 600 people read this blog yesterday. Even if only 1/2 of you donated, that would potentially help 900 people. WOW!

Pictures...

At the ER - pale, lethargic, and angry that daddy had to keep her arm straight. 

In the PICU at Doernbechers - settling in to our new room - blood transfusions started.

Watching Wall-E while trying to rest in the PICU.

Day 2 - starting to feel better, but still oh-so-sleepy.

A fun visit from grandma, grandpa and big sister really brightened Claire's spirit. Gary walked in the door and she happily said "papa" and waved.

Grace, on the other hand, was slightly more interested in the buttons to push, all she could drink apple juice, stickers, and the little sink and toilet. 

Walking around the PICU with our fantastic nurse, Jamie.

Monday night, resting in the crib with daddy.

Her glowing toe inside her bunny slipper. 

She loves the dangling IV parts on her arms.

Tuesday morning, grumpy and hungry since she couldn't eat prior to being sedated. This was taken right before her biopsy.

Biopsy done, anesthesia not quite worn off.

Once she woke up she was so hungry...

And wasn't too happy when the bowl of cheerios was empty (this is truly what had just happened). 

Starting to show life again - quicker than we expected. 

In our new room - acting like good old Claire.

Showing off her pink "lobster claw" that is hiding her last remaining IV.

The play room. 

Just checking everything out.

Back to her old antics. A heavy metal crib, a rolling cart and a large oxygen tank... perfect toys for any 13 month old. 

9:30 pm...

Well, we got the results of Claire's biopsy today. It seems as though we didn't get the definitive answers we were hoping for, but we didn't get bad news either. Basically we found out that she definitely has abnormal cells in her marrow, but not enough to indicate leukemia. Again, this doesn't mean that she is for sure cancer free, but it does mean that we need to wait on a few more tests to come back. We will get more results tomorrow and other tests will trickle in over the next week. 


Her blood counts are normal now. Her hematocrit is up to 30+ (goal was 24-35) and her hemoglobin is 10.3 (our goal was to get up to 10). They will check her CBC again in the morning and as long as her numbers remain normal, she will be done with transfusions. She is also off all IV fluids and is free to roam about the room, the halls, and the rooms of new friends we are meeting. 


We are now residing on the hematology and oncology floor at Doernbechers. I have never had a reason to be on this floor, but it really is all that it's cracked up to be. There is a large playroom with crafts, toys, puzzles, books, games. There are long hallways to explore and new nurses to impress. But there are also some very sick kiddos and some very sad parents here. It is heartbreaking to see all of these families up here, rooms decorated for Christmas, here for the long haul. As you are praying for our Claire to be healthy, you might also want to say a prayer on behalf of the other families that here. 


We'll know more soon, and I'll post when I can. Thanks again for continued prayers. 
Psalm 91:1-2 "Whoever dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the LORD, 'He is my refuge and my fortress, my God, in whom I trust."

12:20 pm...

Claire's biopsy is done. Everything went well. She is waking up slowly, but still pretty groggy. I think she will perk up once we are able to feed her. We are expecting initial results later on today.

I need to say again how impressed I am with the amazing team of specialists that is caring for her. We are thankful to be at this hospital and with these doctors, nurses, techs, counselors, ect.

7 am...

More good news... we got Claire's latest blood work back and she continues to amaze the doctors. Her hematocrit is up to 23.7 (goal is 24-35) and her hemoglobin is 8 (was at 1 in the ER, our goal is to get up to 10). Her uric acid levels are now considered low and there is no sign that her body is breaking down the new healthy blood she has been given. All good signs. We will still wait to get biopsy results before we know what is actually happening in her little body.

And by the way, did you see the amazing sunrise this morning? Perhaps it is because I am sitting in front of a large bay or east facing windows looking over Portland, but the sky has been spectacular. I am reminded of this passage from Lamentations 3 "Because of the LORD’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, “The LORD is my portion; therefore I will wait for him.” The LORD is good to those whose hope is in him, to the one who seeks him; it is good to wait quietly for the salvation of the LORD."

Amen.

An update...

First, thank you so much for praying for Claire and our family. We are feeling it! Last night was a good night - I think I was sound asleep by 9 pm and slept until at least 3 am. Claire didn't fall asleep that quickly - probably because she has so much more energy now that she is full of good blood. Once she did doze off, she was out. After the past 24 hours, it is so peaceful to listen to her slow and rhythmic breathing.

A quick update for those who don't have enough time to read this whole post:
Claire is/was severely anemic and has been at Doernbechers for 24 hours receiving new blood. She seems to be perking up a bit. As for the diagnosis we are getting mixed signals - the first test showed Leukemia but the second did not. She will have a bone marrow biopsy today and we will know more when those results come back (could be a day or two before we hear). Please join us as we pray for a miracle for our baby.


And for a little more info...
Claire has been sick for a while now, but we didn't know how sick. Over the past few weeks we've watched her gradually change - first in her personality, then coloring, then energy level and demeanor. She got a little stomach bug this last weekend and that seemed to be the final straw. She was miserable, blank, lifeless. After 24 hours we followed the advise of our pediatric clinic and took her to St. Vincent ER.

Upon arriving she was immediately given a room in the children's ER and the tests were started. By looking at her, all of the medical personnel could tell that something was really wrong. An IV was started to help with hydration, her blood sugar was tested, oxygen was started, and blood was drawn for a battery of tests. She hated every minute of the ER - screaming, fussing, trying desperately to get out of the bed - which was all sort of a relief to me since it was the most life I'd seen in her for over a week.

When the blood counts came back the doctor told us that she was severely anemic. I asked what her numbers were... her hematocrit (the red blood cell count) was 5.1 - it should be 35-40. The doctor said that he has never seen a patient "this bad." Her body was basically operating with 10-15% of the amount of blood she should have had. After talking to our pediatric clinic it was decided that Claire would be admitted to Doernbecher's Children's Hospital at OHSU. The hematology doctors here were very concerned with her numbers and wanted her in the pediatric ICU where she could start a transfusion immediately and be watched very carefully.

Claire (and Merrick) got to ride in the Panda Team ambulance from one hospital to the other while I followed close behind. She was met in the ICU by a team of doctors and nurses who got to work right away. Blood was ordered from the bank and the transfusion was started quickly. Since her blood volume was so low, they had to start with an exchange (50cc in one arm, 50cc out of the other arm). All of the blood they were taking out was being sent off for one test after another... I have no idea what all they looked in to. After an hour of that, her numbers went from 5.1 to 6.7. Still very, very low, but moving in the right direction. The ICU doctors explained that since she has so little blood, her heart was working over time just to pump to the vital organs (brain, kidneys, etc) leaving nothing for the outer extremities. They had to watch as they added blood to her body that they didn't overload her heart and lungs with the extra fluid. Even though she was supposed to have more blood, her little body wasn't used to it, so they transfused very slowly.

At 3 am the hematologist came into our room and asked us to sit. He started explaining that he looked at Claire's blood in a microscope and saw "blasts." She also had elevated levels of Uric acid. Both of these things led him to believe that she has leukemia. When he said it I wasn't surprised. I think I knew a few days ago that something was really wrong with my girl, and for some reason that word - leukemia - had been floating around in my head ever since. Even so, I think Merrick and I were both a little stunned. Claire, cancer, chemo... not words that we want to ever be spoken together. Yet, there they were.

Dr. Grover continued talking to us about what was next... bone marrow biopsy, lumbar puncture, permanent PICC lines. Lots of words floating around the room - not much was sticking. He then told us to get some sleep. Right.

Yesterday (Monday) was a good day. I didn't sleep, but was able to run home, shower, pack, and love on Grace before returning in time for morning rounds. Claire's transfusions continued, her numbers were rising, but the doctors are in no hurry for the next step. Dr. Recht was very adamant that we do nothing until we are certain that her body is ready for the next step. So today, we watch and wait. It seems to us that her color is coming back slowly, but the biggest reassurance was when Gary and Margaret brought Grace up to see us and Claire's face lit up. She said "hi papa" and waved (she hasn't talked for over a week), and then just glowed while they were with us. She was clapping, playing, singing, screeching, talking, signing (as best as she can with only one arm). Other than the fact that she was laying in a hospital bed, tied down with wires and tubes, she was normal.

While they were here our hematologist team came back in for evening rounds. We are a go for her biopsy on Tuesday morning. I asked about the other tests, and that is when we found out a glimmer of hope. I guess one of the tests that they sent to check for leukemia/lymphoma came back negative. That doesn't mean that she doesn't have leukemia, but that does mean that they will wait to see what the bone marrow shows before doing anything else. The doctors - who after looking at the initial blood and seeing cancer - are a little baffled. We see it as a reminder of our big God who can perform great big miracles!

After grandma and grandpa left, the night doctor let us take her out for a walk. We untangled her lines and set her down. She (with help for balance) walked three laps around the PICU unit. She would stop to let people oooh and aaaah over her, and then continue to the next room. Even at her sickest, she is still a ham.

Last night was good. We all slept (finally) and Claire's blood numbers climbed to 19! Another round of blood and another CBC were taken at 5 am and we are waiting to hear those numbers. 24 would be great... 30 would be fantastic!

So, again we wait. The biopsy will happen around 11 this morning and though we might get preliminary results as soon as this afternoon, we might not know much for a few more days. We are, however, being cautiously optimistic because leukemia is still the most likely cause. We are praying for a miracle - and we know that is possible.

This song (and so many others) have been running through my head for the past few days. If you know it, sing with me...
My Saviour, He can move the mountains,
My God is Mighty to save,
He is Mighty to save.
Forever, Author of salvation,
He rose and conquered the grave,
...Jesus conquered the grave.

We are resting in the peace and love of our savior and Lord and are so thankful that He is holding our family in his hands. Jeremiah 29:11 ^"For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future." God created Claire and had this ordeal planned out before he made her. From Psalm 139 "For you created my inmost being...I praise you because I am fearfully and wonderfully made; your works are wonderful... Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be."

Thank you for your continued prayers. I will update again when I know more.

Pray for Claire...

If you haven't gotten the message yet, we would really appreciate prayer for our baby. She is very, very sick. I am too numb and too exhausted to go into many details yet. She is currently being treated at Doernbechers by a very capable team of doctors. We trust and know that she is in the hands of our great big God, and we rest in the knowledge that this was all in His plan before she was born. There are some tests out now, and we should know more as the hours/days pass. I will update more as I have time an energy.

Psalm 40:
1 I waited patiently for the LORD; he turned to me and heard my cry.
2 He lifted me out of the slimy pit, out of the mud and mire;
he set my feet on a rock and gave me a firm place to stand.
3 He put a new song in my mouth, a hymn of praise to our God.
Many will see and fear the LORD and put their trust in him.

4 Blessed is the one who trusts in the LORD,
who does not look to the proud, to those who turn aside to false gods.
5 Many, LORD my God, are the wonders you have done,
the things you planned for us. None can compare with you;
were I to speak and tell of your deeds, they would be too many to declare.

6 Sacrifice and offering you did not desire— but my ears you have opened—
burnt offerings and sin offerings you did not require.
7 Then I said, “Here I am, I have come—
it is written about me in the scroll.
8 I desire to do your will, my God; your law is within my heart.”
9 I proclaim your saving acts in the great assembly;
I do not seal my lips, LORD, as you know.

10 I do not hide your righteousness in my heart;
I speak of your faithfulness and your saving help.
I do not conceal your love and your faithfulness from the great assembly.
11 Do not withhold your mercy from me, LORD;
may your love and faithfulness always protect me.
12 For troubles without number surround me; my sins have overtaken me, and I cannot see.
They are more than the hairs of my head, and my heart fails within me.
13 Be pleased to save me, LORD; come quickly, LORD, to help me.

14 May all who want to take my life be put to shame and confusion;
may all who desire my ruin be turned back in disgrace.
15 May those who say to me, “Aha! Aha!” be appalled at their own shame.
16 But may all who seek you rejoice and be glad in you;
may those who long for your saving help always say, “The LORD is great!”

17 But as for me, I am poor and needy; may the Lord think of me.
You are my help and my deliverer; you are my God, do not delay.

Starting somewhere...

Where to start? This has been a crazy couple of months for us. Most people who read my blog know that I have been busy, the kids have been sick, Merrick has been working around the clock. We are tired. We are done. We are so close to the end. There is light at the end of our ever narrowing tunnel, but I feel like I need to write something about this period so that we will be able to look back and remember what it was like, what we did, how we survived, and who we have to thank.

Starting back in August Merrick was given a new project at work. We knew it would be busy, and in order to get a good jump on things he started out by working Saturdays and just putting extra hours in here or there.  The girls and I were able to fill our days with outings, activities, Bible studies, friends, etc. We reserved Sundays for God and family - and have been faithful to that commitment - soaking up our time together as we could get it. Anyway, a few weeks ago (when I was in Yakima) Merrick got some pretty bad news about his chip. I won't even try to explain what happened, but basically they had to undo much of the work he had put in over the past two months. There is no wiggle room with the deadline he has, so starting over meant longer hours, more stress, more pressure, more hours away from home. These sure haven't been easy weeks for him, but I must say that through everything Merrick has been strong, patient and positive. I know he is exhausted, frustrated, and worn out, but he isn't letting that effect the girls or me at all. My prayer for Merrick - and join me if you feel led - is that he will have the strength he needs to finish strong, that God will bless the effort and time he has put into this project and that this chip will work, and that through all of this that Merrick will be a light to those he works with.

In the mean time Grace has developed an interesting "issue" that we've been working through. About a month ago she started visiting the bathroom frequently. She runs in, goes, and runs out. The hardest part is that about 1/2 the time she cries about needing to go but not being able to. It is almost as if she has a constant urge to go potty and is only successful part of the time. I didn't think much of it... until it started causing problems and interfering with normal life. We can't drive to the grocery store, or run into the library without having to stop by the bathroom. She is no longer sleeping through the night -waking 4 or 5 times to go potty - even when her bladder is totally empty. She has all but stopped napping and hasn't gotten a full night of sleep in almost a month. She is cranky, whiny, grumpy, exhausted, and doesn't feel good. The day after Thanksgiving we finally took her in to the doctor. After explaining all of her symptoms, talking through possible scenarios, and checking her urine the doctor assured us that everything was fine, but she didn't have any answers. She referred us to radiology for an ultrasound of the bladder and kidneys (just to rule out any possible mass or other physical issue), but told us to hold off for a while to see if anything improved.

On Wednesday we took her in for her ultrasound... she did great.

The doctor called today and said that all looks normal on the ultrasound. There is no internal issue to be worried about. I'd like to say that I'm thrilled - and really I am - but I want an answer to this problem. I want the doctor to be able to tell us what is going on in Grace's mind that is making her think she needs to go potty all of the time. I guess this sometimes happens to kids that are hyper-potty trained... trained at a young age, through the night, no accidents. Sometimes little brains fixate on the bladder and signal it too frequently. It sounds like Grace, but the only tricky issue is that she is waking up at night. The doctor has never seen that happen. At first Dr. Moore asked me to put Grace in pull-ups and just let her go any time she wants. I'm all for that - less trips to public bathrooms - but the problem is that Grace has never worn pull ups and thinks they are for babies. She would be mortified if I made her wear a pull up all day and it would be worse if I made her go potty in one. So, we nixed that idea. Anyway, we've been instructed to "drug" her for a week... If she can sleep all night long (with a nice dose of Benadryl in her system), we will watch and wait for this to go away. If the Benadryl doesn't work, we will head off to visit a urologist to see if he has any suggestions.

If you think about it, please pray for Grace that this "issue" will pass quickly. That she will be able to rest completely and get back to normal as soon as possible. She doesn't like living this way any more than we do. She knows that she is missing out on fun things when she is in the bathroom, but to her this is a very real thing that she doesn't have control of. I hate sitting by watching my child be so bothered by something that is completely out of my control, something I can't sympathize with let alone understand. There are times throughout each day that I get quick glimpses of the "old" Grace and we want her to come back to us soon.

And Claire, well in the middle of this she started coughing, she turned one, she had two parties, she kept coughing, she cut two more teeth, she stopped sleeping through the night, and she is still coughing. The cough started the week of 10/10/10... we are going on almost two full months. More to come on Claire - the good and the bad - when I have time to sit and write her 12 month post.

And yet, in the season of Thanksgiving, we know that we are blessed. We are so thankful for our God who provided for all of our needs, for each other, for our health, for Merrick's job, and for the upcoming season of rest and relaxation that is right around the corner. I have been surrounded by people who love me and my girls and who have sacrificed much to care for us. I don't have words to express how grateful I am to Gary and Margaret for their help and support this week... I'm never letting them go home. They have tried to sleep in my restless house, helped me deal with cranky kids, let me nap when I hit rock bottom, fed my family daily, and most importantly they have been praying for Merrick (and the rest of us) as he is working day and night. Thank you so very much.