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....
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| Kissy faces are her favorite |
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
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| At least someone likes green beans |
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| 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..
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| Cuddling with Mama before she left for work |
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| Waiting Room Fun |
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| 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.....
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| 35 weeks oh my goodness |
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| 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....
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| Haley Bugz and Laney Bug Finally Meet |
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| 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....
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| Hair Shampoo and Salon with Daddy (And more hair falling out) |
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| The sweet moments make up for all the bad |
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| Selfies for Days are her favorite |
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| And still she keeps smiling.... |
BEAUTIFULLY COMPLETE T-SHIRTS
Until we next time, living on HighHope, Trust, and a whole lot of of coffee....we love y'all....
Continued prayers for your family. We serve an awesome God! He will meet all your needs. He even meets the ones we don't realize we have. Bless you all!
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