Monday, March 7, 2016

Hospital Life

Just wanted to give y'all a quick update since our last update was Friday.....

Friday we started CONSOLIDATION!  Friday truly was the longest day in the world....Alayna had to stop eating and drinking the night before since the LP's are done under sedation and we were not sure if she would make counts, so we had to go to clinic at 8:00AM and then wait for labs, her Lumbar Puncture (LP), and then an additional 30 mins before she could eat....She definitely wasn't happy about not eating till after 11, but I had given her a unopened peppermint and she just kept holding on to it, knowing she couldn't have it till I told her it was ok....When she was finally able to eat the peppermint she was one happy girl....

She did great with her Lumbar Puncture, where they also gave her chemo in her spine.  Because she is High Risk, she will actually have LP's the next 4 weeks in a row, with chemo each time.  A lot of people have asked me why she keeps having LP's....well basically, when you receive chemo, either IV or orally, it typically won't cross into the spine, otherwise known as the blood brain barrier.  Leukemia is super sneaky and loves to hang out in spinal every time she gets a lumbar puncture, they pull cerebral spinal fluid (CSF) to make sure there is still no leukemia in her spinal fluid, and they also give her chemo in the same spot, to help prevent leukemia from ever getting there.  We are also part of a research study through a national cancer group and we were unsure if she would be receiving just one individual chemo in her spine, or three different drugs mixed together.  We found out this week we would just receive the one type of chemo, so that is a is a randomized study, so we had no control over it, but we are glad we are only getting the one drug version.  However, the drug she receives in her spine is called Methotrexate.  It is a very common chemo drug and has been around for a long time.  However, every time she has received this chemo in her spine, she has also spiked a fever.  Fever's aren't super common with this drug but it seems to be how she is responding.  Last week when we went to the ER for fever, it was after her LP with methotrexate....the first time we were admitted for fevers it was on day 9, the day after she received methotrexate in her spine the first we were kind of expecting it this week but we were praying against it.....

After her procedure, she also got 2 different forms of IV chemo....this whole process took a very long time because we needed to wait for additional labs, which took almost 3 hours, and after those drugs she was required to receive a large amount of fluids through her port, which only made her swollen....After the steroids her swelling has continued to come down, but on Friday with all the fluids on board, she looked so different and swollen...I am learning that although she may not look like the Alayna I remember, she still has the same sweet spirit and nature deep down, underneath all the drugs and fluids.  Please keep praying with us that her swelling will continue to come down and her face will become less swollen....

My Happy Asian

....needless to say it was a very long day and I was so thankful to finally get home.  Our sweet friend Nicole, who used to be our nanny, ended up ordering us dinner and I honestly was so grateful.  After the longest clinic day ever, it was so nice to not have to cook and just relax as a family.

Saturday morning was a beautiful morning and I got to take Addyson on a date.....Definitely had a mommy fail, however, because I wanted to take her for her first pedicure and we found a place with a princess chair that was just her size....We went and got donuts first (and iced coffee for Mommy of course....Did you know Dunkin Doughnuts has their Sugar Cookie Flavor again!!! Oh my goodness, it's amazing...and I am kind of obsessed....which I shouldn't be but yes, love me some Dunkin Iced Coffee! and I am going to go broke going there getting it!!) but after donuts, we came to the nail salon and I didn't make an appointment because it's a walk in place (or so I thought!),  and sadly the princess chair was booked for a birthday party all day...Needless to say, Addyson was not happy and I felt horrible...but we are hoping to go back this week before new baby comes!

Saturday afternoon I was showered with love at our Baby Shower for Avery Grace.....everything looked so amazing and Kelli and Elizabeth made sure I had all the food I had been craving all throughout my pregnancy like guacamole, buffalo chicken dip, and Coke Zero of course...It was so nice to see a lot of friends that I haven't seen since we were diagnosed....Avery stocked up on diapers and wipe,s and we got some things off our Target Registry too! I definitely feel so blessed to have so much love surrounding this new baby and our entire family....The Lord knew a year ago that we would be faced with all these challenges, and we are so blessed to have our Action family on this journey with us
Sweet Shower Host Elizabeth and Kelli (And Annabelle Too!)

1st Corinthians 1:4
I always thank my God for you and for the gracious gifts he has given you, now that you belong to Christ Jesus. Through him, God has enriched your church in every way—with all of your eloquent words and all of your knowledge. This confirms that what I told you about Christ is true. Now you have every spiritual gift you need as you eagerly wait for the return of our Lord Jesus Christ. He will keep you strong to the end so that you will be free from all blame on the day when our Lord Jesus Christ returns. God will do this, for he is faithful to do what he says

So after I had finally opened up all the presents, and was just enjoying time with my sweet girl friends, I got the call....The same call I got the weekend before....the call I have learned to hate....Alayna Hope had fever of 102.4.......and regret set in....

So for any other kid in the world....Fevers aren't that big of deal...In fact, I even teach my students about the myths of fever and how they really can be treated at home and with medication, etc....However, for a Cancer Kid, fevers are a BIG DEAL. Anytime Alayna has a fever over 101 it means we have to be seen.  Because she has a port, a fever could mean her port has an infection.  Also, because chemo typically kills off the good fighter blood cells, there is a huge risk for infections that her body doesn't have the ability to fight off...This is why she can't be around anyone sick or go to school or be in the nursery at church, and we have to constantly check her....However, certain chemotherapies will cause fever.  On friday she started a new chemo, ARA-C, which comes in the form of a shot (which we have to give her) or through her IV.  Well Saturday morning we gave her the shot and my rockstar husband, with some nursing advice ha, even gave it to her....about 4 hours later is when she spiked the temp.....So not only did she have the LP with methotrexate, but she also had the ARA-C....which pretty much was setting us up for a fever...Since our clinic days are on Friday, our oncologist office is closed, which means we have to go to the ER.......being a pediatric ER nurse myself, it is really no fun to have to go there....we have to put numbing cream on her port, pack our bags (which I am learning to just not unpack ever), find a place for Addyson to hang out, and head straight there......Its really not how I planned to spend the last weekend before Avery comes....

Sadly, we haven't had great experiences in the ER and Saturday night was no exception.  We ended up waiting over 7 hours and we were finally admitted at 2:30AM to the hematology floor.....Our ANC was actually very good, but her blood level called her hemoglobin was critically low, 6.5, and we would need, there we were again, admitted to the hospital 

Hanging out in the ER with Mr. Chemo Ducky (He goes everywhere with us!)

Finally asleep around 10PM

Bored in the ER! His new name is Ronald Alom Shiek Baar. Have I mentioned he needs to trim 
Sunday Morning I was still aggravated from our ER experience and just found myself mad...Mad at our situation...Mad that we were all sleeping different places and couldn't be home as a family...Just mad that my daughter had leukemia and we were having to go through this and REALLY mad that we still don't have an offer on our house, even after we dropped the price of our house....I found myself wanting to complain, and realizing it was ok, I let the Lord know I wasn't happy with our situation....I texted some friends and they all gave me great encouragement...but the Lord knew I needed more...and he sent that to me in the form our an amazing message.   

My sweet friend Kristin Becnel, whose daughter fought cancer and won, and who I've talked about before, spoke at Bayside with her husband about having a bad day a few weeks ago and I have been trying to watch the message, but just had not been able to yet...Sunday morning I decided to go on a run and was watching or more like listening to the message as I ran....Here I am, 38 weeks pregnant, running down the road at a snail's pace, balling my eyes out, listening to her and Jordan's message....and it was exactly what I needed.....Just like us, they felt like they were chosen by God and found a purpose in Charlotte cancer journey...their message reminded me that this whole thing ISN'T ABOUT ME!!!! In fact, it's about the Lord working through us, and every life that hears our story has the chance to b changed...It took me 30 mins, an amazing message, and an awesome run on a beautiful day to snap me out of my funk, and allowed me to realize that the Lord can handle my anger...He already knew I was mad...and He has a purpose in all of this.....That afternoon I spent about an hour talking to our charge nurse on the floor about our ER experience, and in the end, we were both in tears, just talking about the Lord and all He had done for us.....It totally just solidified why we are going through this and I just have to keep believing our house will sell and God has the perfect buyers already lined up......if you have ever gone through anything or every had a bad day, I highly recommend listening to this message...and make sure you have a box of tissues with you

Isaiah 58:10-11 NIV 10 “...if you spend yourselves in behalf of the hungry and satisfy the needs of the oppressed, then your light will rise in the darkness, and your night will become like the noonday. 11 The Lord will guide you always; he will satisfy your needs in a sun-scorched land and will strengthen your frame. You will be like a well-watered garden, like a spring whose waters never fail. 

So today is Monday, and over the last few days we've been living in the hospital....So Thankful for Kelli and Tim watching Addy on Saturday night....I feel so torn because if we end up going to the ER,  I really don't like going without Ron....It just makes things easier when He's around....but I also feel bad because that means Addyson has to stay with friends....She is already staying with friends on Fridays and We have had amazing friends that have really stepped up and allowed her to hang out with their families, but I worry about her.....One of my new Mommy friends who has a daughter with ALL described it's like never really know if you will be in the hospital, clinic, or actually at home, and sadly Addyson can't really understand all of it, no matter how much we explain things....she's 4 and she hasn't been coping in the greatest way....but since Sunday we have been rotating shifts at the hospital...typically Ron spends the night with Alayna so I can sleep in a normal bed and hang out with Addy, I then take Addyson to school, and then he goes to work and picks up Addyson in the afternoons...he gets time with her and around bedtime we switch again....Although it works great for our girls...It's definitely not ideal for our marriage...but I have to remember it's all part of this season of life...I am really hoping we will get one last date night before Avery comes...but I guess that is up to the Lord....I truly am so thankful for a husband that not only supports me, but also goes above and beyond to support our family and love our girls..

Wagon Ride Fun

One crazy fun big Sister

We cannot leave the hospital till Alayna is fever free for 24 was the last day of her ARA-C and then we get Tuesday, Wed, Thursday off before we receive it again in the clinic....the one good thing about being in the hospital is that while she is in the hospital, she can get this drug through her port and we haven't had to give her the shots in her leg...Both her and I are very happy about that! Addyson has also been able to come up and spend time with Alayna, since this time around, we are not on contact precautions....Which has been great....The chemo she is on makes her feel like she has the flu and so she definitely has good moments and bad moments and hasn't been eating a lot...but thankful that the hospital food service keeps us stocked up on Guacamole because we know she will always eat that :) While I am here during the day, it's easy to go stir crazy.....This week my goal is to work on my Premier Jewelry Business....with all this going on, and a new baby on the way, I will not really be able to work (plus I am about to start maternity leave anyways), so I am so thankful to be a part of a company that will allow me to spend all day with my girls and then just leave occasionally at night and still have the chance to make great money, bless other women, and share our story in the process of it all!!! Hoping to get things up and going again soon! 

My sweet girl

So how can you pray for us??????

1. NO MORE FEVERS!!!!! I would love to get out of the hospital for a couple days, and have time to finish getting ready for Avery...we can only leave when she is fever free for 24 hours and today her fevers have been lower, but she typically spikes fevers at night so who knows when we will actually be discharged!!!! Also, please pray for no fevers in the coming weekend, and her body will learn to adapt to the new crazy chemo drugs...also as her hair thins, she is scratching like crazy and her head is very dry and doesn't help that she can't have showers or baths while we are here, so pray we can find a solution and she will continue to not have many side effects from the chemo.....

2. PRAY THIS BABY WILL COME SOON!!!!! I am being induced next Monday, which I would love to not be induced...but considering our situation and that randomly going into labor, especially if we just happen to be in the hospital...doesn't work out so well, leaves us with not having much of an options.....I've basically just given up on going into labor on my own.....I've never actually gone into real labor on my own, and I was hoping this pregnancy would be the one time I could....Both Addyson and Avery had to be induced at almost 41 weeks, and the thought of waiting that long this time, especially since if I went to 41 weeks, it would be the same time when we know Alayna's counts will be super low, just does not seem ideal.  So next Monday Avery will receive her eviction notice....HOWEVER....I truly would love for her to come on her own....I read an article this week about how doing squats helps you prepare for I've been doing squats and trying to go run every day....being a part of different fitbit challenges might also have something to do with that as well lol.....I have tried having spicy name it.....I am still believing that she will make her own grand entrance...but if you could join me in that prayer that would be awesome

3. OUR HOME! I know I say this every week....but y'all, we lowered the price and have had even less showings since we lowered the price...I just don't get it....A lot of people have asked me why we don't rent it out...but once again, we really need to sell it to be able to financially ok over the next 2 years of treatment...we also don't want to even deal with having renters in the middle of everything else we are going through....but 2 power bills, 2 water bills, paying for sewage on a house that doesn't have toilets being flushed...none of that is all....We are almost $20,000 below all the other comps so it just doesn't make sense to's truly a gorgeous home....I know the Lord has a reason in all of it...but we are down to a week before Avery comes and we need a miracle...THIS WEEK!!!!!!! Please stand and believe with us that this will happen and our mountain will be moved in the next few days!!! 

Matthew 21:21
Then Jesus told them, “I tell you the truth, if you have faith and don’t doubt, you can do things like this and much more. You can even say to this mountain, ‘May you be lifted up and thrown into the sea,’ and it will happen. 22 You can pray for anything, and if you have faith, you will receive it.”

Also...we still have 2 fundraisers going on and we are so excited to have toddler sizes in our t-shirt fundraiser...Although I keep forgetting to actually order Addyson and Alayna's shirts...I know I need to do that, along with the 1000 other things I have been meaning to do! But check it out...I would love to see all the pictures of your little ones in their shirts and I can't wait to hear all the stories that will come from people wearing the shirts and hearing our story!!!! I just know the Lord is going to continues to show up and show off! Check it out here Prayers for Alayna Hope T-shirts

4. Prayers for Nesting Needs and a Date Night.....
I know this is a silly request but I would really just love to finish up everything before Avery comes home...Ron was able to paint Avery's new dresser and ours too and it looks coming soon....My Mom has worked so so so hard on the nursery, and she will be bringing every thing with her when she comes, but I would love to finish decorating the nursery and getting the last few things of our list and registry we need before she comes...Also...since Ron and I are swapping places every day, we really haven't had much time together...we are praying for one last date night before we become a Party of 5, and are believing the Lord will provide a way for us to have this happen...I need time with my man ha! 

Ron got the dresser painted right before her fever spiked

Thank you all so much for your continued support and stay tuned for the next blog....My good-looking Husband, with a crazy beard, has been working on a blog and I cannot wait for y'all to ready it!!!

Trusting in the beautiful and complete.....

Current Fundraisers
There's also a Usborn books fundraiser going on...check out the the link on my Facebook

After the 15th there will also be a Thirty One Fundraiser! 


1 comment:

  1. Praying for you all! ๐Ÿ™๐Ÿป๐Ÿ‘จ‍๐Ÿ‘ฉ‍๐Ÿ‘ง‍๐Ÿ‘ง