Friday, May 13, 2011 11:15 PM, MST

Thank you for continuing to pray for Hannah.  Today was refreshingly better but the few days before this were rough. I haven’t seen her like this in a long time and it brought back memories that I forgot were there. We originally went to urgent care last weekend because of very unusual eye pain. She said it only hurt when she moved them to the right or left but as long as she didn’t close them or move them she was fine (easy right).  The only thing that showed up when I googled that symptom was Graves disease (ha?) and “go see a doctor immediately.” You gotta love Google.  This symptom with her eyes lasted most of the week along with fevers that lasted 6 days. She went from chills to back pain to very severe headaches. Obviously all of this wouldn’t be as much of concern if it wasn’t for her counts being so off.  Because fever as well as headaches and back pain can be signs of relapse it was a very unsettling feeling.  Her doctors would always tell us that headaches that came and went were not as much of a concern but headaches that became persistently worse needed to be reported. 

The night before last night she woke up and said “mom it’s a 10”.  For those of you not familiar with the pain chart, whenever we were in the hospital she was asked to rate her pain.   Hannah ALWAYS minimized it because she HATED the meds and the additional doctor visits and hospital stays that the intense pain ultimately brought. That is why when she called it a “10” I knew it was bad.  I decided it was time for another call to the clinic and they decided they wanted to see her. So Thursday morning, after taking Josiah to school, we went back to the oncology clinic. Needless to say Hannah wasn’t happy with me. For those of you who know Hannah you know that she is ultra sensitive to her environment and even the smells and sounds triggered unpleasant memories for her.  I had to pull out the zofran because between the headache and the smells her nausea became intense. Her doctor rechecked her counts and they were identical to her blood counts from Sunday. They still feel like it’s probably a virus but they had hoped to see a little recovery in her blood counts.

 Unless things get worse they want her to come back next week for another count check. They also said if her fever didn’t go away by the weekend she needed to come back in as well.  So Hannah was absolutely thrilled when the thermometer read “98.6”.  And of course I was thrilled as well.  It was such a long week for all three of us and of course especially for Hannah, but I was so grateful that God has promised that “His compassion is new every morning.” I kept thinking about that verse this morning.  Lamentations 3:22-34 has always been one of my favorite passages in the Bible, obscure I know, but so rich with the truth of God’s character.  Lamentations 3:22-23 kept coming to mind:

 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.

 

So thankful for the amazing faithfulness of our compassionate God!

 Thank you again for carrying us with your prayers! You will never know what it means to us!

May 11, 2011

Hi everyone,

First I want to thank you all for your texts, emails, posts and especially your prayers.  You have no idea how they have ministered to me and how much I really have needed it, now more than ever.   I’m sorry I haven’t had a chance to get back to those who have called or emailed or to update sooner.  Please know that this is no indication of how much your support has meant. Our days have been full and Hannah’s symptoms have required more attention and intervention than usual.  The road with Leukemia is long and even though some parts are over the parts that remain are not always visible to everyone.  It is easy to become weary.  Especially as you look around and see many who have been in this battle for years;  or even harder to see those whose battles have been cut short.  Trying to explain these things to Hannah at 5 is very different than trying to explain things to her at 9.  I know how weary I am, I can’t imagine how weary she must be.  I think she is sick and tired of being sick and tired.    And I think I am just tired.  The days of updates at 2:00 am are gone but my friends would say that is a good thing😉.

Our clinic trip on Monday said that it very well could be a virus since viruses can sometimes wipe out counts but some of her symptoms are still unusual for a virus. There were no blasts (leukemia cells) in the blood smear so that was really good, but with Leukemia; the only way to know for sure is to check the bone marrow and spinal fluid.  Her doctor is optimistic (but that is also his personality and he is always optimistic so it is hard to know for sure). 

They want to recheck counts in a couple of days and go from there.  There are a couple of more specialist they may want her to see depending on what her counts show. Please continue to pray for Hannah and Josiah.  Please pray that God will be their protector and defender.  I know he loves them more than I ever could and He ultimately knows what is the absolute best for them.  What an amazing thing to be able to hold on to that fact and to know that it is not my burden to carry!  How I wish that for all of our precious friends that are on this journey with us! On the days that I feel very alone in this journey, He quickly reminds me that the God of this universe is holding my hand and the hands of my children.  I would not trade that for anything in this world!

Thank you again for being there and for loving my kids

Keep praying :-)

Well, in the back of my head I knew that a visit to the urgent care would set my mind at ease and there would be some simple explanation for her symptoms.  After examining her, the urgent care doctor did not seem overly concerned at first, but since some of the symptoms had to do with her eyes she did want us to follow up immediately in the morning.  However, I knew any doctor we would see tomorrow would want to see current blood work so I asked (in spite of sweet Hannah’s protest).  Before Hannah left, the doctor was kind enough to do a CBC (a blood panel).  What I thought would alleviate my concerns had quite the opposite effect.  Hannah’s platelet count was the lowest it has been since she stopped the heavy duty part of her treatment (3 years ago).  Her white cell count and her ANC were also very low and had not been this low since well before she ended treatment.  There were a few other things that were off as well.  While there could be other reasons her blood work is so off, the doctor did say that bone marrow suppression can be a cause.  And of course leukemia cells can cause bone marrow suppression.  After asking a lot of questions, the doctor did say that she had just seen a little boy that was diagnosed after having similar blood work.  The doctor’s concern and urgency did begin to show. She wanted us to follow up immediately with her oncologist so today is going to be a full day of appointments.

Please pray that God would heal whatever is going on with Hannah and that he would be close to her heart. Please also pray that God would give me an extra amount of His strength and His grace today.  I am already feeling very spent and emotionally drained and I really want to be fully present for Hannah & Josiah.   Again we thank you for praying

Would love your prayers

Sunday, May 8, 2011 4:08 PM, MST

Hi everyone,

I actually started this update a few days ago but since we’re on our way to urgent care for some unusual symptoms for Hannah, I thought I would send it even though it’s not complete…

I know it’s been a long time since I’ve updated.  Life has been full but I am so grateful to God for my two  beautiful children!  I do want to ask you all to pray for Hannah.  She has been having some sporadic, not so good symptoms lately that have been a little concerning and hard for the doctors to sort out.  I can always tell that the symptoms are real when they interrupt her sleep or stop her from doing something fun that she loves to do.  She is due for some blood work as well as some long overdue follow up appointments with the orthopedist, the pediatric ophthalmologist, the neurologist, and possibly the immunologist (as her immune system is not where it should be yet).  It’s amazing when you look at her and realize that she went through two and half years of chemical warfare (yes, that’s where the term chemo therapy came from, they discovered during the war that cancer cells began to die in those with who had been through chemical warfare).  After being bombarded for two and a half years with some of the most toxic chemicals (aka. Medicines) that have saved her life, it is no wonder that her precious little body has been affected.  Her symptoms could simply be side effects from the chemo which actually would be wonderful.   I know it sounds crazy.  I guess it takes a cancer mom to understand how incredibly grateful you can be for pain and other symptoms that are simply due to side effects😉.   One amazing thing about this journey is that it gives you an amazing perspective on what really matters.  This truly has been a gift.  Unfortunately, the further away we get from our journey the more distance this gift becomes.  Until of course you hear about one more friend whose child has lost the battle, your gratitude for each day rushes out of you and overtwakes you.  This is one part of this life changing journey I pray I will never lose.

I do ask that you will continue to pray for our family.  I have been co-leading an amazing ministry (www.mendingthesoul.org ) under the covering of our church.  It truly has been a blessing to be involved in this ministry and we are grateful for a church that is supportive and committed to helping those who are hurting find healing.  At the same time anyone who has been involved in this ministry is very aware that satan would like nothing more than to put an end to it.  Satan detests the fact that God’s precious children are finding healing from the abuse that satan has used to keep them chained.  Please pray that God will protect Hannah, Josiah and myself as well as Summer’s family (the other counselor who is working with me).  We appreciate your prayers so much!

No eye has seen, no ear has heard, and no mind has imagined…

“No eye has seen, no ear has heard, and no mind has imagined what God has prepared for those who love him.”               1 Corinthians 2:9

Hi everyone,
I know it has been an incredibly long time since I updated and I have wanted to let you know how Hannah is doing. But tonight my heart is heavy and bittersweet.  Our entire family would love your prayers.  Very early Friday morning my mom died very unexpectedly in her sleep.  While she did have some health problems, they are unsure what caused her death.  

We are thrilled that she is now dancing with Jesus.  By now I’m sure she is delighting in being reunited with many who have gone before her, including her precious parents, my dad (her husband of 40 years), her first child who died when he was 2 weeks old (my brother who I never met), Russ’ dear mother, and her grandson Micah (my little guy).  While she will be missed by all of us, especially her grandkids, she left a legacy far greater than any of us fully realized.

We miss you already mom but like I told Hannah and Josiah today, “to Tata (their name for her which is the Arabic word for grandmother), it will be like a blink of an eye and we will all be together again. Please pray for our whole family and especially her grandkids.  We would also love your prayers that during her funeral service people would have the opportunity to hear about our precious Jesus and the amazing love he has for us, just as they have seen His love lived out in her life.  I know nothing would give my mom greater joy than to know her death brought people to life.

Please Pray for Us Today!

I only have a second but I just wanted to ask you all to pray!  We have a clinic visit today and Hannah will have some blood work done.  Last month there were a few unusual things in her blood work so they said if they find them again, they will need to do a “full work up”. I’m assuming that meant a bone marrow biopsy but I didn’t ask😉.  She also has had a few symptoms here and there so we would love your prayers!  THANKS!

Asking for prayer…

I will answer them before they even call to me. While they are still talking about their needs, I will go ahead and answer their prayers! ~ Isaiah 65:24, NLT

I have this verse posted on Hannah’s CB site.  When I read it for the first time I loved it so I wanted to share it here.

There are a lot of awesome things that have been going on in our lives that I want to share, but for now I just want to do a quick post to ask for prayer.  Hannah has had some symptoms over the last week that feel all to FAMILIAR and I would love your prayers.  I feel like rather than waste energy worrying, or explaining, for now I would just ask you to pray.  I love that I can do that with all of you who love Hannah so much.  We have an apt set up with her oncologist for Monday but she may be having blood work tomorrow andwe may see them sooner depending on the results. Please Pray and I will keep you posted. 

She also seems to be battling a virus (which is unrelated to the other symptoms) and I would love your prayers for this.  She just started Choir Camp, which is something she looks forward to all year.  At the end of the 2 week camp they perform a musical wth a Christian emphasis.  The first time she did Choir camp was 2 years ago and in the middle of hard core chemo. She went daily for 2 weeks but the day of the performance she was hospitalized and ended up being the scariest day of this whole journey. She was admitted to the PICU (pediatric Intesive Care) with a blood infection, went into septic shock, had a seizure and then a secondary fungal infection. The thing that made her the saddest was missing Choir camp. 

 This year she has remained so unbelievably healthy all year long so she was discouraged when the first day of Choir Camp she began feeling hit with something.  Please pray that God would place Healing hand on her and whatever she is fighting would disappear.  Such a small thing to some battling so much worse but to Hannah who has had to miss so many things, this is big and I would love for her to see that God cares for even our small requests!  Thanks again for checking in and carrying our little girl with your love and prayers. 

Promise to post pictures soon!

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