A Word on Patience

No word from Dr. Libby yesterday regarding the blood tests, so I bet we hear something Monday. Brooke didn't feel very well yesterday and looks a little more run down than usual. I think it's this crazy weather...two hot days, cold today, and nothing but wind and dirt. It really plays havoc on her allergies. I usually gage Brooke's symptoms based on my own and I've been struggling all week. I'm not sure if that's the "correct" way to do it, but since she can't talk and my mind-reading capabilities are limited - it's the best I can do. So when my allergies get me down, I can usually bet hers will get her down too. I guess we're two peas in a pod in that sense.

Let's talk about patience. It's a little ironic, but Mike and I appear to be role-swapping. He is becoming the inpatient one while I am remaining uncharacteristically calm. I like it (from my perspective anyway). Patience is one thing I've had to "acquire" over the past 21 years. It's pretty simple really...all you ever do in life is wait so you might as well get used to it! And for a high-strung, fast moving person...having Brooke and being married to Mike is almost an oxy-moron. Brooke, nor Mike never get in a hurry on ANYTHING. Mike is the most laid-back human ever born. He and Brooke have two speeds: neutral and reverse. Needless to say, over the years -I've had to learn to "cool my engines." Brooke has taught me a great deal of patience, among other valuable life-lessons. I am thankful for that. I thank God every day for giving me Brooke!!!

A friend made a comment a couple of weeks ago that caught me off guard. He said, "Won't it be nice when we all get to heaven and Brooke is healthy and can talk?" I laughed and replied, "I'm not sure I want to know what she has to say to me." I wonder what she would say? Would she thank me for being her mom or rip me for all of the needles, the dental work, the weekly infusions, having to be strapped down from head to foot, sedation, surgeries, etc. etc. I would be willing to bet she would thank us. That's something a lot of people on the outside looking in don't realize...for all of the medical struggles, and pain, and uncertainty - there is the flip side of a child who is always happy, forgiving, loving, sweet, naive, non-judgemental, etc. There is another side to our life that most never get to experience and it is given to us by God to help deal with the other issues that are more challenging. I tell people that I wish they would take the time to get to know this child because she is truly an angel on earth! She is what God expects us to be. She is our example; our inspiration and our hero. She is our Brookie!

So I guess my sermon of the day is this: SLOW DOWN AND SMELL THE ROSES. Take notice of the small things that really matter and don't worry about things outside of your control. Once I started living what I was preaching - my life became a lot easier. I did this through prayer. I even went as far as to create a list of (1) things within in my control, and (2) things outside of my control. I have to read it often to remind myself when my mind gets clouded. The bottom line is this: If you can't change it, don't let it control you. Remember that God is in charge. Turn it over to him!

God Bless you all --
Gena

Still Wondering

Dr. Libby called today with the CT results. The spleen is enlarged (which we knew) and there is a place on her lung that is inflamed. Since she does not have fever, a cough, wheezing, or any other symptoms - he feels this is most likely scar tissue from a past issue. The kidneys both looked good. He is still puzzled as to why the Neutrophil levels are so low. I told him that Brooke had always been a medical mystery and that nothing about her has ever been "textbook." He decided to do additional/repeat blood tests so I took Brooke to the lab this afternoon as soon as the orders came over the fax. Those are done! She even had veins today...HOORAY. Now, I'll email Dr. Libby and let him know the blood tests have been done so he can call for results tomorrow. We'll go from there. I'm praying for normal Neutrophil levels so this nightmare will end.

Thanks for the prayer warriors diligently praying on our behalf!
God Bless you all!!
Gena

CT Scan done

We're home! The entire process took a little over 4 hours, with the actual test taking a mere 30 seconds. What a day! We got up at 4:30 this morning because UNM wanted us there and signed in at Radiology by 6:00 (we had to drive in from Edgewood). We signed in and sat; it was a typical day at the hospital. We finally got called back to CT around 7:15 just to learn that they weren't aware it was a sedated CT so we went back to the waiting room for more waiting while they figured things out. Once they finally called Brooke back and got her situated, things really slowed down. The nurse informed us she couldn't administer the sedation that Dr. Libby ordered; a doctor had to be present. Of course not...this is the one sedation that actually works on Brooke and without side effects! To make a long story short - the nurse finally gave Brooke a small dose of Adavan (Valium) to help relax her while they attempted to get an IV started. (This was a contrast CT scan so she had to have an IV.)

It turns out Brooke was veinless and bloodless today - go figure! No veins were to be found. The CT nurse called an ER nurse who stabbed her twice and never got a drop of anything (except tears from a screaming child). They all eventually had to swallow their pride and call in the "Rapid Resonse" team. I had never heard of such a thing until today, and let me say - it was impressive. These folks get called in for the really tough stuff like a kid with no veins. A young man shows up with his doppler machine and found a vein and proceeded to stick our child (with a really long needle I might add). One stick - and he drew blood. HOORAY! He was the day's hero!! By this time, the Adavan had fully kicked in and she was nice and relaxed. Since the Adavan worked so well to relax her, there was no need for the "second" drug they had planned to give her. Less is definitely more in this case! We went to CT, did the super-fast scan and back to the room to wake up a bit. Piece of cake. Ha! I will make notes of using Adavan for these types of tests in the future!

When we left the hospital we decided to surprise Brooke by taking her to see some of her favorite people...the Special Olympic New Mexico staff. They were kind and gracious as always and did some "Standing O's" which is a big hit with her. (It's a Special Olympic New Mexico thing.) If any of you ever have the chance to attend a state Special Olympic meet of any kind - I highly recommend that you do. It will change your life in ways you can never imagine. It opens your eyes and cleanses your heart. You'll leave a changed person. These athletes are truly incredible and their spirit of competition is awe-inspiring. Randy, Christine, Chris, Oscar, Jane and the rest of the staff do a wonderful job making the lives of our athletes meaningful and fun while creating a lifetime of memories. We love them for loving our kids!!! Thanks guys!!! I've attached a few pictures from some of our competitions, i.e. track, bowling and equestrian. Special Olympics is a big part of Brooke's life and she looks forward to competing, or should I say she looks forward to socializing, doing the "special o", playing with Gair in the Special Orchestra and to the dance. They all L-O-V-E the dance!!

Track practice starts March 17th, so we've got to get this blood thing figured out so we can get her on the road to recovery. Her team needs her and most importantly --- she needs them! Thanks for the continued prayers. I'll post as soon as we get the results.

We love you all -
Gena

P.S. Yes, yellow is Brooke's favorite color. And for the record, she expects yellow ribbons at any SONM event, no matter what place she gets. Red or blue is unacceptable...they must be YELLOW.

How do we do it?

Mike and I are commonly asked "how we do it." Simple answer --- GOD. Our path in life may be different than yours but we all have burdens to bear. We know we are never alone. Without faith and our beliefs - we couldn't handle life, at least not in a way that would be pleasing to God.

The following statement was read this week at our employee annual meeting by our CEO and his words really touched my heart. The author seemed to put into words that which I have never been able to. It goes like this:

"The measure of our future success and happiness will not be the quality of the cards we are dealt by unseen hands, but the poise and wisdom with which we play them. Choose to play each hand to the best of your ability without wasting the time or energy it takes to complain about either the cards or the dealer or the often unfair rules of the game. Play both the winning and losing hands as best you can, then fold the cards and ante up for the next deal."
~ Joe Klock, author

Dr. Libby just called to make sure the CT appointment had been set up. What a nice guy. How many doctors call their patients...and 5 times now! I thanked him and told him he's been an answer to our prayers. I told him we often times feel alone in Brooke's healthcare processes because of her many challenging issues, but he has truly been a Godsend. I did express some concern for what to do in the event of the "what if's" (i.e. fever, infection) so he gave me his cell phone number and told me to call him, or have Dr. Luu call him, if we ever need to. WOW. What a blessing this man is!

Brooke is doing well. She's not liking having her teeth brushed, her face scrubbed, and her hands washed a billion times a day - but she's tolerating it. Her respite provider is getting sick of watching home movies because Brooke tends to get 'stuck' on one and watches it over and over and over and over. Ha. We went for a short walk earlier and I'm sure it felt good for Brooke just to be outside (even if it is chilly). On the funny side...can you imagine how germophobic I am now after dealing with Salmonella in July, taking a Micro-Biology class last semester, and now having to deal with a severely neutropenic child? Don't laugh! If I wasn't OCD prior to July -- I certainly may be now!

Have a good evening and please keep the prayers coming.
Gena

CT Scan

I talked to Dr. Libby during lunch and Clovis will not do the CT scan here unless Brooke's Pediatrician is willing to be there for the entire process to oversee the sedation. While I muffled my laugh at the thought of even asking for this to take place, I told Dr. Libby to go ahead and set it up in Albuquerque and to let me know when and where and we'd make the 4-hour trek up there. I understand PRMC's hesitation on treating a patient like Brooke who is a little more challenging than most, but their response just drives home a fact I already knew...we belong in Albuquerque. It truly is the best fit for Brooke and her care. So it looks like we'll be at UNM bright and early Monday morning preparing for the CT scan; 7:30 is the set time.

I also talked to Brooke's Immunology nurse today to see if there was anything else we could do to help protect Brooke right now. She assured me that we're doing everything possible plus some. Why doesn't that ever seem like enough??

Thank you for the kind words of encouragement and the get well cards. Brooke loves getting mail! We appreciate all of you! Please keep the prayers coming! We serve an awesome God.

Severe Neutropenia: An Explanation

I found this on a website and wanted to share it with you so that we all can have a better understanding of what is going on with Brooke:

"Neutropenia is a condition that happens when the level of neutrophils in the blood drop below 1000/cmm (per cubic millimeter). Neutrophils are blood cells that are produced in the marrow, or core of the bones. The blood normally contains 2500 to 9900 neutrophils/cmm. Neutrophils are very important because they fight infection. When bacteria invade the body a chemical signal is sent out and the neutrophils, like fire fighters responding to a blaze, rush to the site of infection. The bone marrow also responds by speeding up its production of neutrophils to replace those involved in fighting the infection. If, however, production of new neutrophils is suppressed or slowed down, a shortage may develop, and any infection can overwhelm the few neutrophils available. Therefore, a person with only a few neutrophils is at particular risk for developing a serious bacterial infection. Severe chronic neutropenia is the condition where the bone marrow doesn't produce neutrophils in the blood above the 500/cmm level (on a continuing or recurrent basis, or in cycles, lasting for months or years), resulting in not enough neutrophils to fight infection.

Infections are a serious problem for all patients with neutropenia. Neupogen is a medication that helps the bone marrow to work better, helping the marrow to produce neutrophils. Once on Neupogen congenital patients and idiopathic patients neutrophil counts generally rise into the normal range. On Neupogen cyclic patients neutrophil counts still cycle, however, the goal of treatment is to raise the lowest absolute neutrophil count (ANC) in the cycle so that the person does not develop an infection. The most common side effect with Neupogen is bone pain when the person starts Neupogen. The bone pain generally resolves within the first two months."
Source: http://depts.washington.edu/registry/Hints.pdf

Neupogen is the "GCSF" shot Dr. Libby has mentioned to us several times. He briefly talked about it again today but said it is costly and most insurance companies won't pay for it until a diagnosis is in place; therefore, we must wait. Why must health issues and necessary treatments always be dictated by insurance companies? I'm ready to try anything that will make Brooke perk up!

Blood test results

What a long day! Thank you so much for the prayers!! I finally heard from Dr. Libby around 4:00 this afternoon. He said nothing in Brooke's blood tests revealed signs of cancer. PRAISE THE LORD and a H-U-G-E sigh of relief!! He stated that her red blood cells are normal as are her platelets, but that she is severely, severely neutropenic. He told us to continue to be very cautious with her. She is not anemic right now, which is good. Her kidneys are ok, her liver is ok, there are no signs of lupus or rhematoid arthritis. The next step is for Dr. Libby to set up a CT scan in Clovis, which he said he will work on in the morning. I told him as long as he worked closely with PRMC on how to sedate her and what to use for the sedation- we are ok with it being done here. Anything that saves us from having to make the 4-hour trip to UNM! He still has to figure out what is making the spleen big and why the neutrophil levels are so low. He said he will also be checking her for mono.

We are thankful for the continued support from all of you and the prayers going up in Brooke's behalf. Please keep them coming!