Steroids, Screams, Some Scares and Smiles sometimes mixed in between!

This last week and a half has been a steady week, a challenging week, and a little crazy in the midst of it all....

For me personally, it involved a lot of working....That's one blessing for sure.....Although Ron has not been able to work very much, at least the Lord has given me the strength to keeping pressing on, despite being super pregnant and with everything else going on....

Last week we had a surprise visit from Pop Kid and Paw Paw.....I worked another 12 hour shift on Tuesday and it was a crazy day...For some of you that live in other states, our area is running rampent with the Flu....working in a pediatric ER, where I am constantly exposed to it, pretty much makes me worried....I have been wearing a mask...but knowing that I have a sick baby at home makes it way worse...Not to mention, working 12 hour shifts in a crazy busy pediatric ER, well....that made me super moody especially all week last week....I have to admit I had a few moments where I just lost it and needed to kind of run away....but I managed to do that, thanks to my amazing husband

Time with Pop Kidd and Paw Paw (not pictured)

MY SuperGirl

Thursday I ended up teaching and we had a minor scare.....All day I was having contractions....and they were super close together and kind of painful....none of my other babies have ever come without getting an eviction notice....so I find it hard to believe Miss Avery will come on her own...but after all day long contractions, I ended up at the hospital to be monitored....My midwife is great and was really the one who pushed me to go in....After about 4 hours, we realized I was definitely having contractions...and consistent contractions...but I was not actually changing me or causing me to do any more dilating....we found out I am 1cm and 60% effaced, but not much more....Already that's more than I was with Addy and Alayna, but I still don't think she will come on her own.  With the craziness of treatment, I have decided it's ok for me to be induced, and that it is ok, especially since we are trying to plan things around treatment...Now obviously she will come when she wants, but hoping to be able to be kind of prepared and that my mom will actually make it for the delivery...

Fun Times in L&D

Avery looked Great!

With all the working, it made time fly by and by Friday it was time for clinic.  Our clinic visit was actually pretty laid back! We didn't need any blood and we didn't get any crazy news, so it was nice just to have a normal Friday...and weird that clinic is our new normal Friday...I left and ended up having my last day of teaching in the hospital and was so glad to have a great last day! Also, my amazing students blessed us with super sweet gifts, including a date night, and a coloring book for me for the hospital! They said it would help reduce my stress...They seriously were so willing to go with the flow, and for that, we are all so thankful! It was truly a blessing, sticking it out. and continuing to teach, despite the circumstances!!! 

Great Clinic Day

Saturday we had a great family day.  My sweet Sister in Love and my twin brother came into town, and we got to spend the day with them.  Amanda (amandasueannecom) has been wanting to take pictures of our family for a while, and I was so blessed by her, because she got to take pictures of us and she even did some maternity pictures for our nursery! She is amazing photographer and so we felt so blessed to not only have amazing pictures, but to spend much needed time with our family...I will post a folder on Facebook with all the pictures...but here's a few of my favorites....

Nickless Life

This picture could not better some up this time of our life

Love my sweet Big Girl

My sweet girls

just love this one

Another favorite

Swollen but still smiling

yes he's good looking even with the beard

that one tear

My sweet girls

Miss Avery Grace

love!

Sunday was also another great day! I was able to help lead worship at church and we had a fun day just spending time with family as well.  My husband has been encouraging to sing a lot before this new baby comes, and I am so thankful for him, because he really just thrives when he's able to serve at church...so it's a hard choice to figure out whose going every week..but thankful for our friends who help us out so we can go together on Sunday nights! And it's way fun jumping around worshiping this far into my pregnancy!!!

Sunday Singing and Super Preggo

The rest of the week was truly spent just adapting to life on steroids....We have been giving steroids twice a day, to help fight Alayna's leukemia, and the steroid life is so hard....She wakes up multiple times a night, after being such a good sleeper before all of this, wanting to eat...she is moody and irritable and downright mean...She is obsessed, beyond belief, with Taco Bell, and I am so thankful for $1 Chicken Quesadillas or I would go broke....The mean attitude is super hard on Addyson....and the swelling....don't even get me started on the swelling....it has been so hard to see her change right in front of my eyes.....She has gained over 5lbs and for this Mama's heart, it's been so hard to see her become this other person...she doesn't even look liker herself to me...so it's really been hard...I literally have been counting down the moments and doses,  and tonight we got to give our sweet girl her last dose for a long time....She will have to take steroids again later in treatment, but never for longer than a week, so the swelling should not be as bad.....I am definitely ready to have my sweet girl back, even though she is pretty cute as a butter ball...

Sweet girls with sweet hats from friends at preschool

Tuesday we also had a lab check up, and once again our counts keep rising, and we didn't need blood, although we did need some fluids...proabably because the steroids are raising her sugar level. We also haven't had as much movement on our house, but we got amazing news on Tuesday.  We found out HGTV has chosen our house for a story in their May issue of their magazine as part of a story on homes across the country! This was a huge honor, and although it won't release till May, it was encouraging.  We still have not had any offers....And this is so aggravating.....there's a lot of pressure to lower the price of our house and I am personally having a hard time with that.  I just want the Lord to sell our house, without having to lower the house.....We even had another relator this week comment about how our house was priced way lower than other comparable houses....so we are faced with a choice to lower the price, or keep having to pay utilities and a mortgage for a house that no one is living in....So please continue to pray for us in this situation and just that we would have wisdom.....We have decided to wait to lower the price till the end of the month and pray about it till then.....Tomorrow we have another showing so we are hoping for good news tomorrow!

Having to wear her a lot because she is just so heavy

Deutoronmy 8:1

Be careful to obey all the commands I am giving you today. Then you will live and multiply, and you will enter and occupy the land the Lord swore to give your ancestors. 2 Remember how the Lord your God led you through the wilderness for these forty years, humbling you and testing you to prove your character, and to find out whether or not you would obey his commands. 3 Yes, he humbled you by letting you go hungry and then feeding you with manna, a food previously unknown to you and your ancestors. He did it to teach you that people do not live by bread alone; rather, we live by every word that comes from the mouth of the Lord. 

Tomorrow is a HUGE DAY for us....Tomorrow is our day 29....the last day of Induction Therapy...Tomorrow we will have another bone marrow biopsy and aspiration, along with another Lumbar Puncture where they will place chemo in her spine....we will also get IV chemo and the labs will be drawn to determine our risk stratification.....Although we will not actually receive results till next Wednesday, tomorrow is huge......We are praying the leukemia on the microscopic level will be 0.01%!!!!! We know that God can do this and we are going into this day expecting it! We know we are already high risk, but if the value is not below 0.01%, we will then be placed into Very High Risk....I feel like Daniel and His 3 friends, because yes we know the Lord can allow this to happen....but EVEN IF HE DOESN'T, we are still trusting and believing for Alayna's healing, making her beautifully complete....

Daniel 3:16

16 Shadrach, Meshach, and Abednego replied, “O Nebuchadnezzar, we do not need to defend ourselves before you. 17 If we are thrown into the blazing furnace, the God whom we serve is able to save us. He will rescue us from your power, Your Majesty. 18 But even if he doesn’t, we want to make it clear to you, Your Majesty, that we will never serve your gods or worship the gold statue you have set up.”

So overall, things have been consistent and steady, and challenging all in one....Next week is an off week with no medicines and just the chance to help Alayna's counts rise so we can start the next phase of treatment next Friday....CONSOLIDATION!!! Ron ended up bartering some work with a sweet friend who has Disney Vacation Club Points and so we are actually going to get a one night BabyMoon early in the week next week at Animal Kingdom Lodge...which has always been my dream to go to and we will have finally get to have a date night and to have a night away before new baby comes....To say I am excited is an understatement....we will get results on Wednesday, so it will be a great distraction to help me not worry about our results...Also, if our counts are good on Wednesday, we might get to spend a little time with Alayna at Disney Thursday before her counts really start to drop in her next phase....

We received an amazing package today from our sweet friends in the Children's ER 

We have also been blessed by so many people having fundraisers for us, and financially with all that has been going on with the house, and the medical bills starting to come in, it's so encouraging to have the help from friends and family....Currently we have the following fundraisers....

Our t-shirt fundraiser only has about 2 weeks lefts...These adorable shifts are a great way to give and receive something super fun that will help us share our story with the world and give God all the glory....checkout our  Booster T-shirt Fundraiser

Also, we love that Alayna's middle name and second name is HOPE, because we are truly believing and standing on the Lord's Hope in our lives!!! Check out our necklace fundraiser Premier Hope Necklaces for Alayna Hope

Another sweet friend has an amazing headband company through instagram called adiandezzie‬....she is donating 10% of her profits towards Alayna...these headbands are super cute and we cannot wait to show them off! Feeling so blessed for this adorable fundraiser...check her stuff out...it's amazing!!!

Adiandezzie

Also we still have the GOFUND ME fundraiser going on and continue to be blown away by those who have given...this account is being used for this year's medical bills we have coming in....and it's scary, but so encouraging to know the Lord has already provided so much! Alayna Hope's GoFund ME

HERE'S OUR PRAYER FOCUSES

1. FIRST AND FOREMOST!!!! We are believing for the 0.01% MRD results that we will get tomorrow!!! Although we won't know results till Wednesday, we are believing we might even have favorable cells, which would be a complete miracle from the Lord, since we didn't have any on day 8! Join with us in praying that she will be at this level, which would put her in COMPLETE REMISSION!!!! Although it wouldn't stop treatment, it would set us up for a more successful treatment plan and better risk stratification!!!! 

2. That our house would sell and we would at least receive an offer WITHOUT having to lower the price.....and that we would make the right decisions in all of this....we found out just this week we are having to pay $80 a month for sewer that we are clearly not even using and there's no way to turn it off, so the bills for this beautiful house keep adding up, and we NEED THE LORD TO SELL IT ASAP! Please also continue sharing the Zillow link and telling your friends about this gorgeous home that now, even HGTV has selected as a model home! Our lovely house for sale

3. Pray that our counts will continue to rise and we will be able to start treatment for Consolidation next Friday....and that we will be able to actually enjoy a night away from our girls....with no fevers or sickness while we are gone!!!! And pray for our sweet friends who will be watching our girls!

4. Pray for Alayna's swelling, appetite, and attitude, and that these steroids will quickly exit her system.  Also that she will return to our sweet girl we know she still is, and quicker than normal!!! And for this Mama and Daddy's heart and sanity in all of it...it's hard to wake up in the middle of the night and we are tired.  We know that with a new baby coming, that will start happening, but hopefully Alayna can go back to a great sleeper before new baby comes....And just that the swelling will go down even quicker than expected for this Mama's heart!

5. Pray for the timing of Avery....I found out this week I won't be allowed to be induced till 39 weeks, which is totally understandable...I was not wanting to be induced at all, but with all this going on, I realized it's ok for me and I need to just be ok with having to plan things based on Alayna's treatment...but I am soon uncomfortable and getting bigger by the day.....so it truly would be pretty amazing for Avery to come in her own timing, and in the right timing!!! We are constantly praying that the Lord knows better than we know and are going to be excited to welcome her whenever she does choose to come around! So prayers against the pain and discomfort, and that we can also get all we need to done before she comes...nesting is in full swing for sure!!! Psalms 139 has been such an encouragement to me this week....you should all go read it...but here's some of my favorite parts of it

Psalms 139

You watched me as I was being formed in utter seclusion,

    as I was woven together in the dark of the womb.

16 

You saw me before I was born.

    Every day of my life was recorded in your book.

Every moment was laid out

    before a single day had passed.

17 

How precious are your thoughts about me,[b] O God.

    They cannot be numbered!

18 

I can’t even count them;

    they outnumber the grains of sand!

And when I wake up,

    you are still with me!

Thank you all so much for following us along on this journey....our testing starts at 8:00AM so this Mama definitely needs sleep.....Keep sharing our story......we love already hearing about the lives that have been impacted by our Sweet Alayna Hope.....WE love you all and will update again when we get amazing results on Wednesday along this journey to our #BeautifullyComplete

High Risk, High Fever's, and High Hope that outweighs them all....

Another week of induction complete.....Another week since I last blogged....and once again...this one might be a long one just because it's been a crazy week....so hopefully we can be better about the updates.....

We have officially survived 17 days of induction (Which they call the hardest part) and only have 11 days left!!! Praise the Lord!!! After 17 days on steroids, which are given in high doses twice a day, and act as an oral cancer agent to destroy all the bad chemo cells, I have a very moody, super hungry, tired girl, who still has these moments of cuteness and smiles, but there are definitely moments of craziness in our house....Poor Ron, it's like having two pregnant women in one place with cravings, moodswings, and weight gain.....Definitely fun in the Nickless house....

Kissy faces are her favorite

So last week ended up continuing to improve after the weekend and Alayna got to spend a lot of time with Daddy....I am still working at the hospital ( I only have 3 more shifts before maternity leave) and teaching for UCF (only 3 more days as well) and I have been so thankful....my students have really been so understanding in this entire situation and I have really enjoyed still teaching, in spite of everything...I have also gotten to teach some in the evenings, so we can still do chemo on Fridays and I have loved having my sweet girls at home.....

I knew over the last weekend, or I thought at least, that her counts had dropped because she was extremely fussy, but we were still able to get to the park one day (since outside is mostly ok!) and, of course, with Daddy, she had a lot more energy....Needless to say, I was ready to see what Friday would hold at the clinic

At least someone likes green beans 

Fun PJ's from Tiffany and Aunt Lisa and amazing Mini blanket made by Trissi

So thankful for our awesome preschool, Community Alliance Preschool, who has just been awesome about having Addy on a crazy schedule. and she has enjoyed going to school more now that things are so crazy...Also, so thankful for Christine once again, because she has been having sleepovers with Addyson on Thursday nights since our clinic days have been so early...

Friday's clinic went relatively well...Alayna, once again with help from our awesome childlike specialist Lauren, was a rockstar having her port accessed and didn't even cry! Lauren showered us with awesome headbands and fun while we waited what seemed like hours on end for our platelets....Alayna once again needed platelets (which is the part of the blood that helps hold everything together or the "sticky"part, and this is also is the part of the blood that if it is low, she will get bad bruises) but didn't need packed red blood thankfully! However we did get some challenging news..

Cuddling with Mama before she left for work

Waiting Room Fun

new headbands

Originally we were placed in the Standard Risk category and would receive standard treatment.  This meant most of our treatment would be done in the clinic, or at home.  Our doctor really believed we would stay Standard Risk, and we were also praying we might even drop to Low Risk, but knew that chances weren't as great for that..HOWEVER, we would trust and believe no matter what the outcome would be....When we started this whole process, in Bug's blood she had 80% blast cells, or leukemia cells.....well on day 8 when we had our lumbar puncture to check her spinal fluid for leukemia, which PRAISE THE LORD! was negative.  They also drew regular, or peripheral blood....Well Friday, we got the day 8 results, and instead of 80-100% blast cells, she now only has 1.3% blast cells which is AWESOME!!!! However, to stay in standard risk, she needed to be at 1% or lower.....so.....that means, on day 29 of induction, when we need to be at 0.01% or less, that she might not be, and even if she is, we will become High Risk because of the day 8 blood results.....I was shocked....seriously only .3% difference....And like our awesome doctor explained, if it was up to him, he would say, 0.3% really not a big deal...but since the protocols and research is standardized, and we are part of a clinical trial, there's no way around it....

Psalms 16:8

I have set the Lord always before me,

Because He is at my right hand I shall not be moved.

SO WHAT DOES HIGH RISK MEAN???

Well basically, during our first interim maintenance phase, (about 9-10 weeks from now), instead of taking chemo at home orally, now we will be spending 4-5 days at a time in the hospital and receive high dose chemotherapy in IV form, and have to wait for our counts to rise before we can be discharged home...and we have to do this 4 different times...With higher doses of chemo comes more challenges....like the potential for stronger side effects...risk for infection, more mouth sores....BUT WE SERVE A BIG GOD and we know that with all these challenges, it's just another chance for God to show up and to show off.  We know that she is going to continue to just keep pressing on with no side effects....It also means that we will have to depend on others more, because by then, we will have a newborn and Addyson as well, and that is so hard for us....we are doers....so it's so hard to ask for help and depend on other people...but obviously the Lord is changing that as well....

Isaiah 41:10

Don’t be afraid, for I am with you.

I will strengthen you and help you.

I will hold you up with my victorious right hand.

Don’t be discouraged, for I am your God.

So after finding that out, and having a challenging teaching day on Friday, my amazing hubby decided I should attend the women's event at Action and I am so glad I did! We watched war room, which I had not seen, and Mrs. Ellen Dailey gave an awesome message.   It was so awesome to just see people and be encouraged.  Mrs. Ellen and I were talking after the movie and she gave me this amazing reminder to cling to about the Israelites.  Every morning the Lord always sent Mana...and it was always the perfect amount...some families took more than other families...but it was always based on need and the Lord ALWAYS provided just the right amount...It seems simple, but it was was such an encouragement, and I know that the Lord will continue to provide for us...just this week alone we have been blown away by different blessings from people: letter's, packages, financial support, you name it...the Lord continues to provide...thanks so much to all who have given on the go fund me and other outlets too!!! here's the go fund me link and one day I will be able to personally thank everyone who have given...one day....

Friday night my sweet Premier Mama and dear friend Danielle came into town, and Saturday morning I got to spend some time with my amazing Premier daughters and sweet friends....which was also amazing..but around 11:45 I got the dreaded text....Buggy had a fever of 101.6, which meant only one thing...we would have to go to the ER....fevers are pretty common after chemo but with Alayna's levels already so low, so any little cough or cold could really make her sick...that is why we have to be so careful about germs....we had yet to have to go to the ER, and this was not what we were expecting...but I am slowly learning that planning is impossible when dealing with cancer and all we can do is trust....so thankfully to the AMAZING Althof Family....because of them, Addyson got another fun spend the night party that night, and Ron and I headed to the ER with Alayna...

When we got to the ER her fever had dropped, but she quickly started to decline...her heart rate was beating way too fast, she was breathing very fast, and she was clearly symptomatic.....They quickly accessed her port without any tears or trouble (once again, Rockstar little girl!) and then the waiting began....The ER experience was definitely not one of our greatest moments, in any regard, but I am so thankful that it happened, because I finally got to be on the other side of an ER room, waiting, expecting certain care, and being constantly surprised with a certain standard of excellence I have come to expect, and may or may not have seen....so we finally got to our awesome 4th floor oncology  floor and things started looking up....we got to see one of our doctors and found out this admission would be at least a 48 hour stay....We quickly got results and everything was coming back negative....labs were ok...flu negative, RSV negative, chest X-ray looked great and urine was fine too (yes, she pee pee'd on the potty for us!  SO AWESOME! It's the little things!) We had a really tough night the first night, because she was still running some fevers and just so uncomfortable...she also came back rhino/entero virus positive....which sounds so scary and bad...but really it just means that she has a common cold and we probably all would test positive for it, but with her counts so low, a common cold could really knock her down and make her very sick....it also meant we had to be placed on contact isolation...and that we can't really leave the floor....which has been a challenge...Alayna loves to go to the train, playground, and playroom, and it helps to get her up and moving, which is now not allowed, so it's been a challenge

That Saturday night I actually got a text from my boss from the defibrillator company  I work for and they needed someone to see a patient in the Arnold Palmer ER....ummm, hello...I was already in that same ER.....I ended up seeing the sweetest patient and got to talk to her parents and even share our story with them...all while waiting to be get situated in our room, and by the end of everything, I was not only able to help them with her Lifevest, but also able to talk about the Lord and all He was doing in our lives.....and even make a little money.....if that isn't the Lord, I don't know what is....and the Lord continues to allow crazy stories like that to happen, just as a simple reminder that He's got us taken care of!!!!

Sunday morning we realized why she was so miserable.... Her hemoglobin dropped to 6.5, which meant she would need more blood....So for Valentine's Day, Alayna got some lovely red blood and a coloring book from Daddy, and Mommy got roses and chocolate.....Not sure when we will get to cash in on the raincheck for a Valentine's Day Dinner Date, but hey, at least I have some really cute, sweet, Valentines! Daddy and I switched places and Mommy was also able to go to church and sing that afternoon...I wrestled back and forth with going, knowing I needed to be with her, but since Ron was with her, I knew that getting to Action, and worshipping in His presence was truly the best thing I could do for her, for us, for everyone....so I was glad I went....Sunday night I also got to spend some quality time with Addyson and we really got to talk about everything going on....I got some great advice about explaining things to her from another ALL mom and I think she is finally starting to understand what is going on....She is also scared about Alayna loosing her hair...but I was able to show her some pictures of how cute Alayna was without her hair as a baby and I think that helped.....

35 weeks oh my goodness

Mommy Addy Date

During my devotion this morning, (Monday), after 8 hours of glorious sleep (even Addy slept in!) the Lord really spoke to me...I read a couple different devotions today they seriously all talked about the same thing....Moses andAbraham...and their faith.....and their righteousness.....Abraham and Moses were not righteous men because of their talents or skills...no, they were righteous because of their faith in the Lord....."When God wants to get a job done, he calls the workers, and He equips them to do it.  He also calls others to come alongside to help.  He will give you what you need.  He will equip you for the task He has given you to do.  He always equips those He calls.  No matter the task.  God will put into you what He wants to get out of you" (From First5 Devo).  Also, with Abraham, "He didn't allow his circumstances to decide his faith; He resiliently chose to let God's words ring true in his heart and mind.  He trusted God to be faithful to His promises...Not only did Abraham receive God's promises as true, but he worshipped God for those promises! Even before God fulfilled His promises to Abraham...."(From my Daring Faith Bible App devo)

Romans 4:20-24

Abraham never wavered in believing God’s promise. In fact, his faith grew stronger, and in this he brought glory to God. 21 He was fully convinced that God is able to do whatever he promises. 22 And because of Abraham’s faith, God counted him as righteous. 23 And when God counted him as righteous, it wasn’t just for Abraham’s benefit. It was recorded24 for our benefit, too, assuring us that God will also count us as righteous if we believe in him, the one who raised Jesus our Lord from the dead.

In your life, I don't know what challenges you are facing.  Clearly you know ours....but I do know one things....God called us to this life...He knew we would be placed High Risk...He knew things wouldn't be easy...He knew this weekend Alayna would have a fever and that I needed to be in that ER, and that I would see another patient who would need my help....We've been called and chosen for this life....Was it one we wanted?...of course not...I could complain...I could be miserable...and so can you...but what's the point?...it doesn't change things....in fact, it only makes things more challenging...but realizing that we are fighting against the devil, and that the Lord has already won, that the Lord has given us EVERYTHING we will need to fight this battle...that He's calling us to something deeper and stronger...and is going to equip us along the way...It's actually pretty amazing....He choose us....He knew we could do it....so in the midst of the storm.....We are choosing, once again, joy and to trust....

We pray the Lord will speak to you all through all of this and you will be encouraged knowing that whatever it is, the Lord has got it.....don't be afraid.....

Continued Prayer List

1. Pray for 0.01% for the MRD result on day 29!!!! This is our biggest prayer.  This will place Alayna in complete remission and will also allow her to stay High Risk, and not get bumped to Super High risk....WE CLAIM THIS AND KNOW SHE WILL BE COMPLETELY HEALED......

2. Prayers for no more fever, and continued counts to rise....if we can stay fever free over the next 24 hours we can be discharged tomorrow!!! We are definitely ready to be back home as a family!!!! Today's Hemoglobin was 11.3...the highest it's ever been since diagnosis, and our WBC (White Blood Cell Count, and what fights infection) was 1.1, so things are looking better

3. Prayers for movement on our house....Last week we had a big open house and have had lots of showings since then and also what appears to be lots of interest...but still no offers.....we are praying for an OFFER ASAP!!!! Like this week....and if more than one came in that would be even better and something the Lord could totally do....some feedback from the showings suggested having our house staged, so that people could see how the living room and dinning room would flow...but honestly, it's not something that seems even possible based on being here all the details and cost behind it...so prayers that people can see the vision of our house without having to pay to have it staged!

4. Continued financial blessings and support...it's amazing how something like a Starbucks giftcard or Chickfila or Taco Bell gift card can mean so much to us.....(Yes, I crave Taco Bell...but I do eat some of their healthy options lol) and it has been such a blessing to Alayna to receive fun gifts....today Hugz from Bugz came and visited....you should check out this amazing organization hugzfrombugz.org/...they do gift bags and help raise support in central Florida...we have loved getting to know this sweet family whose daughter fought ALL and won!!!! Although Alayna doesn't look excited in this picture....she was showered with love today and has been having such a fun time with new toys...they even brought matching Minnie Mouse dolls for Addyson and Laney Bug and beautiful sterling silver Minnie necklaces that also match Haley's necklace for both girls....it was so awesome to talk to them and be encouraged by their jouney....

Haley Bugz  and Laney Bug Finally Meet

Rocking our Hugz from Bugz hat (and duck dynasty beard)

5. Pray for this Mama's heart as Alayna's hair continues to break off and her cheeks get chubbier and chubbier....I know it's just part of the process and after steroids, her cheeks and belly will go back down....but we still have about 10 days of steroids and the steroid rage is hard on everyone....especially Mama and Addy...who gets the blunt of most of the screaming and meanness....currently Alayna has been craving guacamole....today alone she has had like 5 little sides of it.....thankfully APH has awesome guacamole and keeps us well stocked....

Hair Shampoo and Salon with Daddy (And more hair falling out)

The sweet moments make up for all the bad

6. Prayers for Mama as we are now about 4 weeks away from Avery being here....pain and stretching....swollen feet....and a whole lot to do to get ready, is kinda stressing me out....as well as the thought of weeks in the hospital with Alayna and Avery.....My sweet friends told me this week they are hosting a sprinkle of Avery on March 5th and that just means so much...because in the middle of all this, it's so easy to forget we are having a new baby...but they fact that our sweet Action Family is doing this is just awesome, and even gave me a reason to register at Target, which I probably never would have done...and its gives me excitement in all of this...but I know once again the Lord will gives us strength and praying for one of the most laid back, best sleeping, babies ever....How ironic that we choose Grace for her middle name...since that is definitely something we will need in the middle of all of this.....

Selfies for Days are her favorite

And still she keeps smiling....

Finally, we have a sweet friend Natalie, whose daughter recently fought cancer and won as well....well, she and her sister have an amazing eye for design and have worked for DAYS on designing us a fundraiser T-shirt for Alayna....and it is amazing!!!!! Natalie volunteered her time and creativity, and also worked so hard with the t-shirt company to make sure we had an amazing design and product....These shirts are available in short and long sleeves...and they are SOOOO awesome!!!! Here's the link and I will also post it on my Facebook...Please share with all your friends....we would love these t-shirts to be an outlet for our story, so others can be encouraged and be forever changed because of what the Lord is doing in our lives...... So excited to see all our friends and family in these awesome shirts....thanks again to Natalie sooooo much!!!!

BEAUTIFULLY COMPLETE T-SHIRTS

Until we next time, living on HighHope, Trust, and a whole lot of of coffee....we love y'all....

Induction truth

Today was a hard day. I didn't feel like a good Mom at all. Since yesterday Alayna has not been herself. She has been incredibly clingy and needy and also incredibly hungry. They tell me all these things are normal because of the high dose of steroids she is receiving that act like a chemo agent to decrease her immune system, but it has been an extreme challenge. One I feel like I am not succeeding in very well, and there were moments today I literally thought, am I loosing my mind? Thankfully it was a cold but beautiful day and even going running with 2+1 kids, a stroller, and 2 miles somewhat helped the sanity factor, although it didn't help the situations of the day...or help me not from loosing my composure or cool multiple times

Last night we were blessed to be able to attend church together, and it was nice to just see and be around people we know are praying for us, as well as good for me to just get out of the house besides working the 5 days in a row I worked...

But last night and yesterday we noticed the change in Alayna and it continued today. Addyson has also been finding it hard to adjust to this new life and can't seem to really express what she is feeling so she does whatever she can to get Mom's attention. This pulls me in a lot of different directions and every part of me wants to live in fear of not knowing what will happen when we add a newborn to the mix, but I know that is exactly what the enemy wants. He wants us to live in fear. But I refuse. 

Saturday night at work my husband also told me that some of Alayna's hair had started to come out after bath and I seriously almost lost it. Although I am praying it won't happen, if that day ever comes, I know it will be a hard one. Loosing her hair makes this whole thing seem so much more real. Her hair is one of my most favorite things about her. Everyone wants to tell me that she will still be beautiful and that it doesn't matter and she won't care. To be honest, that isn't at all what I want to hear. I know she is beautiful but I love her hair. I don't want it to fall out. So thankful for another friend who could just let me vent that night and help me feel better, that it indeed just really stinks and it's is ok to not be on with it....praying to get some good pictures before it does happen...

Over the last few days I have been able to connect with some amazing women that have also gone down this leukemia journey and they have been super helpful, but reading their stories once again sets this unfamiliarity to my life. When I read of what is to come...all the different phases and the ever famous delayed intensification and evil "red chemo drug", once again I find myself saying, "How can I do this? Especially with a 4 year old, no family that lives here, and a newborn? How can I give all my girls everything they need? And tonight I am reminded of Paul, and how he felt this way too. 

“Each time he said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me. That’s why I take pleasure in my weaknesses, and in the insults, hardships, persecutions, and troubles that I suffer for Christ. For when I am weak, then I am strong.”

2 Corinthians 12:9-10 NLT

http://bible.com/116/2co.12.9-10.nlt

I realize that only through Christ will I be able to continue on this journey. And in all these other stories and situations, I have to remember that that is those women's and Moms' and parents' stories. The Lord has clearly decided to write our own story and chosen us for this life. Chosen me to be Alayna, Addyson, and Avery's mom. For a reason. For a purpose. And when I cannot see the way, I know He will be there to carry me through it all. 

My best friend Autumn reminded me today that Alayna's middle name isn't Hope without reason. She sent me this verse and analogy and tonight it is the one thing I am clinging to to get me through this night.....

And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us." 
Romans 5:2b-5

Sufferings > Perseverance > Character > Hope that doesn't disappoint!

Tonight I am believing that Hope will not disappoint and that a future of joy will come and make us brave....

He's making diamonds.....

Hello Sweet Friends! WOW!!! Can I just say wow....first and foremost we have be blown away by the support we have received...through meals, care packages, go fund me donations, and different people just giving, it's been amazing to see all the Lord has done....this is going to be a long blog post, so good luck getting through it :)

2nd Timothy 4:17

17 But the Lord stood at my side and gave me strength, so that through me the message might be fully proclaimed and all the Gentiles might hear it. And I was delivered from the lion’s mouth. 18 The Lord will rescue me from every evil attack and will bring me safely to his heavenly kingdom. To him be glory for ever and ever. Amen.

So wow, it's been a week since I last updated y'all....Sorry about that...let's just say that life has definitely been requiring some adjustments!!!! When we left off we had made it through Friday and the craziness of the first day of chemo....

Saturday was a relatively calm and relaxing day.....Saturday morning I got to actually take a shower in the amazing parents shower on our unit and my life was changed.....no, but seriously, it was the best shower ever.....even better than my shower at home....Also my sweet friend Kristen Becnel, whose daughter recently just fought a different kind of Leukemia and won, came and hung out with me all day!!! She brought all of us goodies and made me a binder, already organized, with various different dividers and sections that I would need to stay organized.  It was so amazing to just talk to her, knowing she had gone through the same situations and how her family has not been fighting for victory, but from it.  She gave me amazing ideas, let me vent about everything, and really just encouraged me.  The one main thing she told me was that in her life, the Word of God had never become more alive and real for them, and they clung to the word...I am also sensing this and long for time reading the word.....our amazing friends have been sending us scripture and it's amazing how much one verse can keep me going throughout the day, so keep the scriptures coming...Spending time with Kristen is definitely something I will remember and cherish and was truly blessed to have her come hang out with us....

Kristen Time!

Saturday night we spent time with the amazing Sonya and had dinner from Mrs. Ellen, and we also realized we all were representing our Action shirts...even though Alayna didn't seem too excited about the matching picture shirt...

Time with Sonya (just realized how pale she was here)

Action Representing...

On Sunday we ended up getting our CBC back and realized Alayna's counts had dropped, once again...Looking back at the pictures I posted just now, I don't think I realized how she had lost a lot color, so it should have been no surprise when they ordered blood and platelets for her....Honestly, most people get upset about having to get blood, but I am so thankful for the power of blood....Alayna has done great every time she has received blood and platelets and her color returns, as well as her energy!!!! After she got blood, we were able to color, play outside on the playground, and really just enjoy our Sunday and also have a great time visiting with Alayna...Ron and I were both hoping to maybe attend a service at Action, but due to some sickness on the home front...we would have to wait another week....on Friday night Addyson started to get sick and ended up having a stomach bug....We knew it was just Satan trying to come against us and we were not going to let him have a foothold.....although Addyson couldn't come visit, it was a great, peaceful day without too many problems...our sweet Angel spent time with us and it was much needed....I am also learning to be so thankful for relaxing days where we can just hang out and enjoy each other's company....Also, so many friends told us about how our entire congregation stopped in the middle of service to pray for our Sweet girl.....so amazing to know our entire Action Family is standing with us throughout this journey!!!

Elevator Rides

Train Time

By Monday, not going to lie, I was pretty over the idea of still being in the hospital....We are so blessed, that for the most part, we can do our treatments on an outpatient basis and I am so thankful!!!  Monday, Alayna received her second IV does of Vincristine (the main chemo she will receive this month!) and we also realized that crushing our medications and putting them in applesauce or yogurt worked so much better than a liquid medication and trying to force it down her!!! We were so thankful we found a solution, and although it is still a struggle, it is very manageable, especially if bribery is involved....definitely hate that side of it, but in the end, I am learning to pick my battles, and a little extra candy or paci time in order for her to take her medication is very worth it to me...Also our sweet friends Justin and Stefanie brought us dinner and just hung out with Ron and I...it was almost like a mini date night...We laughed, we cried....it was truly something I will always remember and exactly what our tired hearts needed

Rocking out Room 4015

On Monday, Ron also came up after working all weekend with my Mom and Jerry to completely reorganize our entire house, go through the baby clothes, and set up Avery's new nursery.....My husband and Jerry even painted furniture!!! He also let me go to target for a little while, which seriously is every Mom's dream.  By Monday night I was ready to be done with the hospital.  Monday night we had a rough night when at 4AM the nurse had trouble getting blood from Alayna's line, so that 4am wakeup call was not so fun

TUESDAY WE GOT TO GO HOME!!!! Praise the Lord, it was awesome....Although it took like forever to actually get discharged, I have never been more excited, more scared, or more ready to be home.....Tuesday was a tough day for me because we got home and nothing felt any different.  My house had been cleaned, but within a few hours having a toddler and 4 year old in a confined space, craziness ensued.  Both the girls were so happy to be together, and I was excited too, but also slightly overwhemed .  My girls were playing together, laughing, and screaming like nothing had changed.  But it had, and I knew it had, however they didn't.  I wanted to pretend like everything was still ok and that the last week was really just a dream.  Addyson also initially had a really hard time adjusting and was saying things like, "No one wants to hang out with me..." and still just doesn't really understand what is going on.  We have really tried to spend more time with her and explain, but she is 4....I'm having a hard enough time understanding all of this, how do I expect a 4 year old to? 

Wednesday and Thursday, while I worked, Ron hung out with the girls and Addy even decided she should go swimming....the pool was freezing but the beautiful weather was undeniable and she couldn't resist...We also were able to get more rules about who we could see, where we could go, and who we could be around....so that made this Mama's heart happy....the Lord has also given me strength to keep working and finding a way to still work since Ron has been home with the girls.....

Friday CHEMO fun day.....Some of you might have seen my post of Facebook, but on the way there the Lord, I heard a perfect song for our journey....the words were spot on and honestly I couldn't help but smile and dance.....In all of this craziness and adjustment, the Lord has given us this sweet peace and I just know everything is going to be ok....Already the stories and the testimonies are incredible...we have been amazed how every person, every nurse, we meet has this incredible story and we get to share ours with some many people and also praise God in all of it....As much as we don't want to be going through this, the Lord has sustained us and given us JOY! How is that even possible?  But the Lord continues to give us strength and I love that this is becoming our theme song....

"Diamonds"

https://www.youtube.com/watch?v=Yf1ARbpB0gA

Here and now I'm in the fire,
In above my head
Oh, oh, oh oh, oh, oh
Being held under the pressure,
Don't know what'll be left
Oh, oh, oh oh, oh, oh
But it's here in the ashes
I'm finding treasure

He's making diamonds, diamonds
Making diamonds out of dust
He is refining in his timing
He's making diamonds out of us

I'll surrender to the power
Of being crushed by love
Oh, oh, oh oh, oh, oh
Till the beauty that was hidden
Isn't covered up
Oh, oh, oh oh, oh, oh
Oh it's not what I hoped for
It's something much better

He's making diamonds, diamonds
Making diamonds out of dust
He is refining in his timing
He's making diamonds out of us

Oh the joy of the lord
It will be my strength
When the pressure is on
He's making diamonds

He's making diamonds, diamonds
Making us rise up from the dust
He is refining in his timing
He's making diamonds out of dust
Making diamonds out of us

I won't be afraid to shine
I won't be afraid to shine
I won't be afraid to shine
Cause he's making diamonds out of dust
Making diamonds out of us

Thanks to our sweet friend Christine, Addy had another sleepover with Ellie, and we woke up super early to drive to the clinic....we were blessed with no traffic and thanks to my awesome bestie Tiffany, Mama and Daddy got Starbucks.....when we got to clinic, met nurse Marlene who was absolutely amazing....we have been so impressed with how many amazing nurses we have met, and Marlene shared her story of how she escaped from Fidel Castro as a child and how the Lord healed her sister from Leukemia....Thankfully to our sweet childlife friend, Lauren, and nurse Marlene, Alayna completely rocked out her Port access...hardly any tears and Marlene even got her port working much better than before....Her sedation and procedure was so fast, with no tears from Alayna or from Mommy, and she was back to her normal self in no time.  Today's chemo was Methotrexate in her spine, and more Vincristine....We also got back initial cytogenetics back from day 1, and there were no abnormal  unfavorable cells PRAISE THE LORD!!!!! This was a great answer to prayer, because it allows us to stay standard risk at this time...there was also no favorable cells, which would help us get to low risk, but we know we serve a big God and there's still a chance we could get to low risk!!! So we are believing for it....Also, Friday's initial CSF results showed no leukemia once again, another big answer to prayers....Although her counts are super low (her ANC was only 240!), her hematocrit was stable at 9.7 and she only needed platelet (which were down to 17) and not blood! Which was awesome.....She was a joy to be around and we can say we survived our first day at clinic with no admission!!!!!

Psalms 28:6

Praise be to the Lord,

    for he has heard my cry for mercy.

7 

The Lord is my strength and my shield;

    my heart trusts in him, and he helps me.

My heart leaps for joy,

    and with my song I praise him.

ready for her sedation

Waiting Room waiting game

As we continue to adjust, please say prayer for us....I find myself having less patience then I should and my girls being more winey than they should be.....I seriously do not know how I would survive without my amazing husband...he is in charge of Alayna's meds even though I am the nurse ha, and he has such a sense of calmness...the last three nights after working all day and having really bad pain in my back and ribs, he never once complained about me falling asleep at 9pm and this morning woke up early before he left for work to give Alayna her meds and cook breakfast, with my coffee waiting...He is incredible and I am so blessed with such an awesome father and husband....despite his massively growing beard......So many people wanna know when he is going to trim it....and I will also join that club.....maybe we can start a petition...Ron trim the beard committee....He said he gets so many compliments he would hate to make anyone sad by shaving it.....so who knows lol

SO HERE'S the PRAYER LIST

1. Pray that we can continue to adjust to this new normal and that this Mama won't go crazy in the middle of it all....I am on my 5th day working in a row and thankfully the Lord has continued to open doors at work so I don't miss out on treatment...but I am tired...and 34 weeks pregnant....and hurting in my back and ribs....(the complaint list continues so I will stop now) so just prayers for strength and no pain

Philippians 4:4

4 Rejoice in the Lord always. I will say it again: Rejoice! 5 Let your gentleness be evident to all. The Lord is near. 6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God,which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

2. Pray that our house sells! We have a huge relator event on Tuesday with food, prizes, the whole shebang...and we are hoping to get lots of showing after....We have had numerous showings this week, but no offers!  So please continue to share our house link and let any realtors you know about the party.... We know one is just around the corner but we need an offer like yesterday!  We are now having to pay power at our old house, so we can show it, and it's just another expense at the moment and although we have been amazed by how the Lord has provided....we still have so many day to day expenses and Ron hasn't been able to work.....

3. Pray that Alayna's counts continue to rise and she continues to take her meds...It is a daily struggle as she figures out where the nasty medication is hidden and it's definitely hard!  Also pray that she adjusts and continues to feel great with no nausea and NO FEVERS!!!!

4. Pray for Addyson's sweet heart....She is still confused about all of this and as a 4 year old, loves to be the center of attention, and I am having trouble explaining things and dealing with the whining....Once again thankful for my husband

Time with my Big Girl

5. Finally, continue to pray for the cytogenetic results...we are believing that we can turn to LOW RISK or even better yet, NO RISK!!!!!

We love you all and I will try to keep you more updated so these blogs are so horrible long....but we love you and thank you so much for all the support...

so thankful we are all Beautiful Complete, and being refined in His timing....

Happy 34 weeks and crazy camera angles lol

Psalms 30:11-12 (The Message)

You did it: you changed wild lament
    into whirling dance;
You ripped off my black mourning band
    and decked me with wildflowers.
I’m about to burst with song;
    I can’t keep quiet about you.
God, my God,
    I can’t thank you enough.

11-12