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

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

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.

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!

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!

S​eeing Hannah’s pain level decrease over the last few months has been such a gift from God. The nights in which the nerve and bone pain has woke her are becoming more infrequent.​ The middle of the night cries of, “mom I need a heating pad” or ”mom, I think I need a motrin” are (dare I say it…) becoming a thing of the past. The hardest thing about watching her in pain was not just feeling helpless to stop it, but it was the realization that for some children, the pain never goes away and they deal with it for a life time. During treatment there is really no way to predict how a child will be impacted and what the aftermath will be. Every child responds to each type of chemotherap​y so differently.​ For Hannah we so often heard, “that side effect is really unusual” or “that rarely happens”. After awhile I began to expect the unexpected . While I always knew that God could choose to completely protect her from any side effects, the knowledge that – often God is glorified in the midst of our pain – was ever before me. However, His Word promises that HIS MERCIES are new every morning and that is a truth I can always hold on to. As always, we covet your prayers for continued and complete healing of Hannah’s precious little body.

She started occupationa​l therapy a few months ago to help with some of the pain in her arm and hand when she writes. They are also working with her at school and we couldn’t be happier with all the school is doing to help address some of her specific needs. She is able to use a devise (that looks like a miniature keyboard) to type things when writing becomes difficult. She seems to need this less recently. Please continue to pray that God would heal the nerve damage from the chemo.

We also are blessed to have found a wonderful Neuropsycho​logist to do the educational and cognitive testing on Hannah. This type of testing is very routine for children with Leukemia, since they get quite a bit of chemotherap​y in their brain and nervous system. The last time she had this testing done was 2 years ago and it was clear that the Neuropsycho​logist was not very good at connecting with children. This can make a huge impact on the results. She also had neglected a few aspects of the testing that couldn’t be redone. Since the initial testing was done before most of the chemo, it was less significant but I knew this one would be much more important in sorting out some of the effects of the chemotherap​y on the amazing mind that God has given her. So I had really been praying that God would provide the right person. In our initial meeting it was clear God had answered my prayers. The neuropsycho​logist asked several questions about Hannah just so she would be able to connect with her when she came in for the testing. As we talked I also discovered that not only was she a Christian but she attended one of our sister churches. But what clinched it for me was after Hannah had spent 3 hours with her doing a battery of tests, Hannah was very disappointe​d when I came to pick her up. Hannah kept asking me when she was going to be able to go back. I knew that was a good sign !

She still has a little more to do before the testing is complete but I am confident that it will help us get a handle on how to meet Hannah’s specific needs. Whil​e we rejoice at all God is doing our heart grieves with some precious families whose children continue to battle from the side effects of the chemotherap​y.

Abby and Avalon are very dear to our hearts. I know I have mentioned them before but please continue to pray for God’s healing hand in their lives. These precious girls and their parents have handled all of it with amazing strength and grace but I know they are growing weary of the long road they have faced so far and the road they have ahead.

Can you also pray a boy from Hannah’s clinic named Chandler? Chandler was 10 y/o when he started his journey. After 2 years of chemotherap​y for Leukemia he began to experience significant bone deteriorati​on (AVN), similar for two what Hannah experienced but to much more significant degree. He became wheelchair dependent but always had an amazing attitude despite everything.​ After 2 years being off of chemotherap​y and making amazing strides physically, his family learned at the end of last year that his cancer had returned. He had a bone marrow transplant 2 months ago but has had some very harsh side effects and is battling a lot of unknowns. If you have a minute please encourage this amazing young man www.caringbridge.org/visit/chandlergoetz   . Please be pray for Chandler in the days and weeks ahead. You have no idea what a difference your prayers make!

The picture we posted is from Good Friday. Th​e night held some special significanc​e but I realize this has gotten way too long so I’ll share more about that next time. Thank you so much for remembering us in your prayers and being there for us. I feel like we are finally at place where God is using us to be there for others ​who are on a similar journey. I am so grateful to God for this and we covet your prayers during this time.

I haven’t been able to get to a computer until now but I had to take a second to share with you the results of Hannah’s spinal tap. “The spinal fluid looks great”.  It’s amazing the impact these few words from our oncology nurse can make.  We are so thankful to God for having mercy on our little girl and sparing her from any more harm! 

Thank you so much for praying for us. I am once again in awe of all of those who don’t even know Hannah who sacrificed their time and so much more. You have allowed God to sear her in your hearts as you have lifted her up before the God of this universe.  I thank God for making my cry for prayer desperate, for without feeling completely desperate I would never know the humility and total gratitude towards all of you who lifted Hannah up in prayer. 
Now I think I’ll go do a happy dance !!!

We still don’t know the results of the spinal fluid and probably won’t until later today or tomorrow.  Her pressure, however, was a lot better – it was 20!  This is actually the lowest it has ever been since she began treatment.  It is still not quite in normal range but who needs normal anyway! Seriously the doctors aren’t concerned at this point as long as she continues to trend down.

I did have a chance to talk to her oncologist about the double vision. He confirmed that double vision can be a significant sign of CNS relapse (Leukemia in the central nervous system & brain).  When I asked him what else it could be attributed to.. he paused and said if the spinal fluid is clear (no leukemic cells) and she continues to have double vision they would probably need to bring her back in to do another spinal tap. Hmmm… I had expected him to list several other things that could be causing it.  Instead the conversation was a bit somber and seemed to hit me a little hard.  So please continue to pray for my fighter. 

This morning when they asked her if she had anything to eat or drink she didn’t answer so I told them no since she had been with me all morning.  But she kept trying to whisper something to me about having eaten.  Later I asked her what she was saying, she said she did have something to eat early in the morning.  After pursuing it for a few minutes she finally admitted that she didn’t have anything to eat, she just knew if she said ‘yes’ they couldn’t perform the spinal tap on her and she would get to go home. I couldn’t help but laugh at my smart little girl!

Thank you so much for your prayers.  Please don’t stop!