7/20/14

Duffy (Kaylee’s mom) Blogging

ANC count ~ Absolute Neutrophil Count: Type of white blood cells that fight off infection in your body. Neutrophils kill most regular bacteria. When one has a very low neutrophil count, they are considered Neutropenic.

Once we returned home from Florida and had K’s blood labs done, we were called by the clinic the following day with the news that Kaylee was once again Neutropenic. Her ANC count was 103. A normal ANC count is between 3,000-5,000. With Leukemia, if the child is below 500, they have an increased chance of getting sick. This means K was at a very increased risk for getting a sick, and we are on fever watch. K’s oncologist suspended Kaylee’s daily chemo until her sedation and chemo appt (which is this Thursday) July 24^th. Her little body needed a break from the daily chemo so her counts can rise.

Kaylee has a hairline fracture of her elbow and has been in an arm cast since June 30^th. This was limiting much of her daily life. Throw in a low ANC count and well, that pretty much means house arrest. I put together very few play dates to keep K (and me from going insane) and we did everything from craft days, to coloring, painting, watching movies, playing outside, seeing family and playing with every toy K owns. She has been such a trooper and now she tells anyone she sees “I have pinnk cast. I fwactoood my ewbow. It didn’t hurt. I so brave and I did good job!”  (It is pretty stinkin’ cute, but more often than not, it’s a bit embarrassing when a random person says Awww how did she hurt her arm? Then I look like the stellar parent when K pipes up “I fell off bed!”)

Last week, I was finally seeing the light at the end of the tunnel b/c I know she has her cast appt (tmwr) to see if her fracture is healed to get her cast removed. (Please God!!) Wednesday Kaylee and I had a good day. She got to see 3 of her cousins and play with them. Micah (Our nephew) has always been Kaylee’s favorite, and she was soooo excited to see him and had a ball chasing him around the house and playing in the playroom with him and her cousin Avrie. We had friends over for lunch on Thursday, and before it was time to get dinner started, K and I were playing in the backyard with the dogs. After dinner, Chris said he’d take K out front to play so I could clean up from dinner. I hosed her down in the organic baby bug-spray (like I did earlier that day) and off they went. 5 minutes later Chris came in carrying a hysterical Kaylee with a bloody knee and a scraped elbow (the one not in a cast.) She had tripped over her own flip flop while walking out front to say hi to the neighbors and she was clearly freaked out by the blood. (Poor thing!)  Her first scraped knee was no biggie and we made her feel like a rock star for being brave while I cleaned it and put a band-aid on it. Later, after her bath, I pointed out to Chris that even with the bug spray on all day, she somehow had 4 mosquito bites on her legs.

The next day (this past Friday) we had a planned play date with friends and decided to take the girls to get frozen yogurt and eat outside. While getting K out of her car seat I looked at her leg and noticed one of the 4 mosquito bites was turning into a blister, and mentioned it to our friend we were with b/c she is a nurse at CHOA. She didn’t seem worried but told me to keep my eye on it. Within the time it took us to order frozen yogurt and sit outside, I realized the bug bite K had on the back of her leg was also starting to blister. (Huh??) I was literally 300 feet away from K’s pediatrician’s office, so just to follow my gut, I called and made her a sick appt. (K seemed a bit moody that day but oblivious to her mosquito bites…she was too busy pointing out her new band aid on her knee and telling people how brave she was. hehehehe.)

Thank God I made that Dr appt. K was not happy to be there as it was past naptime, but The Dr took one look at her legs and said “she has a low ANC count, doesn’t she?” I said yeah, 103. The Dr said “She has a skin infection from the mosquito bite! When you have low ANC count, a scrape or bite can easily turn into an infection a normal body could just fight off. Well K has very few of those fighting cells, so it has become an infection.” I said “This happened last night. She was able to get an infection from a mosquito in less than 24 hours??”  The Dr said “She sure did. She needs antibiotics and a cream called in ASAP. She could’ve easily had a fever by tonight because of this.” So thankful this was caught in time! A fever for a leukemia child means an automatic minimum 48 hour stay at the hospital.

3 little letters change so much of our daily life. A…N….C

Although we feel fortunate that K has been off all her chemo pills, the poor girl cannot seem to catch a break. She has been limited to do so little and now playing outside is causing an infection? Boo! I need to invent a bubble for her to play in wherever she wants and not have the risk of getting sick.

She is so looking forwards to tmwr! She walked around today saying to Chris “I see Dr tmwr! If get cast off, mommy take me to the pooooool; play on playgrounddddd, annnnd I can play with water table, Daddy!” Chris reminded her that even if her arm is not healed, we will get a waterproof cast put on for the remaining time needed, so no matter what, she can play at the pool. (Please Lord, let this be an easy day where 1)these x-rays don’t scare her again 2) shows complete healing of her arm  3)cutting of the cast doesn’t scare her 4) that her arm won’t need physical therapy once the cast is removed. Please keep K in your prayers tmwr morning!

The silver lining on all of this is that you would never know hanging out with K that she wasn’t ok. She can hold her own playing with boys that are older than her, and given the chance, she would run anywhere we would let her. She is happy 85% of every day & she is now in the 40^th percentile of weight for her age. (Back last summer, we had huge prayer requests for her to gain weight b/c she kept losing weight in the hospital.) Her hair is growing back rapidly (and we think it is beautiful!) I take pictures of it every few days & it is so fun to see the difference! She has also noticed her hair growing b/c she loves handing me her brush in the morning, just so that I will brush her hair. A few of her favorite things right now is playing with her kids Dr kit, having tea parties with her singing teapot,(and her tea accessories) “cooking” in her kid kitchen,  and singing to any musical Disney movie. (I still can’t find Aladdin or Beauty and The Beast for sale at any store or online.) She still thinks Minnie Mouse, and any Disney princess is very cool. No matter what time we put her to bed now, no matter how worn out she is it will take her an hour or more to go to sleep. She wakes up every morning between 7-8am & takes a nap everyday by 1:30. (For those that have never read the blog, I always try to add a few things that are baby book worthy, b/c the purpose of this blog (besides keeping family and friends updated) is so she can read this later in life.

So, we are thanking God that K is not on any chemo right now (regardless of the reason why…I think a break is always good.)  I am praying to get through the terrible twos (and I am positive this is why wine was created.) We are thanking God that we have such a strong little girl, a little girl that has not once stopped fighting in almost a year of this battle! Although she is grasping more and more each day, we are thankful that she doesn’t totally understand that she is sick. We are very fortunate to have family and amazing friends that not only like to visit, but always put a smile on her face when they do visit! We are thankful that despite the obstacles K keeps getting hit with, that God is giving her and us the strength to pray and figure out a way to have fun around it.

We are praying for a calm Kaylee tomorrow and on Thursday (Thursday is sedation and chemo day no matter what her blood counts are.) That we will get to the clinic on time so she doesn’t have to wait long without food or water before sedation, that God will get that ANC count to rise and that accessing her port for chemo will go smoothly. Getting that cast removed and her ANC count going up will open up so many doors for us to be able to do every day!

Every day we thank God in advance for healing Kaylee of her cancer, because we have no doubt that will happen!

We want to thank all the prayer warriors continuously praying for Kaylee and our family! Who knows what could happen without those! After this week, I looked up scripture on hope, and found Romans 5:2-4 and it was exactly what I needed to hear and maybe someone else needs to read it, so just in case, here it is.

Through Him we have obtained access by faith into this grace in which we stand, we rejoice in hope of the glory of God, more than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope.

Looking forward in hope of what this week will bring!

Have a great week & when you get a chance…..please…PRAY4K

Jeremiah 29:11~ “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

**For more pictures of how K is doing, you can follow KayleesBattle on Instagram **