The Girl Knows What She Wants!

I'm in the computer room after supper working on a research paper and Brooke comes in with a basketball asking to go outside to play. I explained to her that it was windy and that she would have to play in the entry way instead. A few minutes later she shows up with my car keys wearing her yellow hat, with her yellow jacket on with the hood pulled over her hat, her sunglasses on and toting a bag full of clothes, books, musical toys, etc. I assume at this point that we ARE going somewhere, so I go put Brandi outside, turn off the lights, etc. Brooke is already in the mustang in the pitch black garage. The bag of goodies is in the back seat. She's ready to go. So we drive by the high school to see if we can spot daddy at the track meet. (We see him but he never see's us.) Then we cruise on over to Twin Cronnie for our nightly caffeine, and then slowly make our way back home. This girl knows what she wants and how to get her way!

She had a good day today with Nanny...slept, ate, played and barked orders only a grandmother will adhere to. Ha. She is pale and very tired lately, but overall doing ok since the Neupogen shot. Pray for no side effects!

Love you all!!!!

What's up with this blood?

We saw the Hematologist today for a follow-up from the Neupogen shot on the 15th. Mike took Brooke to do bloodwork on Monday so Dr. Curry would have the results for today's visit. Ugh! Double Ugh!!! The neutrophil levels are only slightly up. From 0.2 to 0.4, which is nowhere near normal. Guess this is all the $3,000 shot can do. Not very impressive. The other blood results looked about as dim. So...she got another Neupogen shot today and will take them monthly from this point forward to see if we can get her white blood count to come up. That would be nice!! Please pray for no side effects with this shot.

I walked out the door of the cancer center after Brooke's appointment and broke out in tears. It is so frustrating not to be able to help even when you know you're doing everything you can to try to make it better. It's hard to accept that sometimes there isn't anything at all you can do. Very frustrating!

I talked to Denver today and the insurance issues are trying to be dealt with at this point. Pray for resolution and a quick "ok" so we can go and get the visit done and over with. I'm ready to get these things underway so we can get closer to possibly having an answer. Wouldn't that be nice!!

Thank you for your prayers. Please keep them coming our way.

Blog Entry # 100!

WOW...this is my 100th blog. My hope is that each of you have enjoyed reading them half as much as I have enjoyed writing them! Thanks to my loyal followers for sticking with me. YOU GUYS ROCK!

Brooke continues to do well. She is finished with antibiotic #1 and has 3-4 days left on antibiotic #2. We feel two strong antibiotics really have helped "knock out" some of the issues she's been fighting. No reaction to the GCSF "Neupogen" shot...YAY! I had a call from Denver yesterday, called them back today...waiting. Wouldn't it be nice to go now and not have to deal with it after our big trip in June. Fingers crossed.

I really don't have much else to say. Two more weeks of school (ready to be done; not sure about the summer session yet), off to Vegas Sunday through Wednesday for work (yes...for work!), and counting down the weeks to Hawaii. Mike and I really starting to get excited. My goal is to get as caught up on sleep as possible between now and when we leave so I'm not completely worn out once we get there. We'll see how that goes.

I would like to make a special request: Please say a prayer for everyone tonight when you go to bed. Pray for people with cancer. For people struggling finacially. For addicts. For people fighting depression. For our government. For people struggling to find their way in life. Pray for a better you, a better me, and for peace. Pray for healing. For our blessings. For life. We have so much to be thankful for...so let's thank God!

Love you all -
Gena

No reaction to the shot - Denver

PRAYERS ANSWERED! Brooke has had no reaction to the GCSF shot this time! Thank you - thank you - thank you for the prayers. She had a really good weekend. She feels good. She looks good. She's acting totally silly. Life is good! We appreciate the kind words and all of the cards! Yes...you can come visit anytime as long as you're not sick. Brooke would love to see her friends!!

I talked to the people in Denver yesterday and the process for the appointments are underway. Someone "will be in touch with me within the next 3 weeks to set up the appointment." Geez. Guess we'll work this in around our vacation in June and Mike's week-long school in Albuquerque in June. At least if it's in June - he'll get to go with me! I really need his moral support for this one. Please pray for nice doctors. For only the necessary tests to be run. For understanding. For wisdom. For patience. For answers.

God bless all of you!

Got the Shot - Infection - Medical Records - Baby

Brooke got the GCSF (Neupogen) shot Thursday morning. So far so good. We're trying to keep ahead of the pain by continuing Tylenol every 4 hours. I expect tonight and tomorrow to be a little painful for her, but maybe not? I need to research other side effects of this shot; Brooke's appetite has been incredible lately. All she wants to do is eat!

The infection looks MUCH-MUCH-MUCH better. HOORAY! We finished one of the antibiotics today just to start another dose of the same thing. It is definitely working. She looks really good today. She's been happy and just smiles all the time. I love that! She is pale though. Very pale. Hoping her INR levels are down somewhat. Will test again Tuesday. I had a message on the machine from Denver, so I will call them back Monday so we can get the ball rolling on the appointment(s)there. I'm hoping for sooner versus later. I would love to get some of the medical yuk over with before we leave for vacation in June.

I spent hours today putting together a medical notebook for the doctors in Denver. I've made it as simple as it can be for them to locate anyting they need to know pertaining to Brooke over the past 3 years. And I underestimated the amount of records I had because I had to jump up to the next size of notebook. Tomorrow I will work on putting my own medical notebook together instead of carrying it in folders like I've been doing. Yep, it's come to this. It's easier to be prepared and organized than to have to dig for something or say "I have that but it's at home." The Denver notebook is impressive, if I may say so. And yes, I'm sure this is one of the reasons people find me intimidating. It's my daughter...I do what I need to do.

We just got to meet Hank IV. What a cute baby!! 18 pounds at 4 months...he's a very big baby! Absolutely beautiful!! Brooke was 21 pounds at 3 years! We all got to hold him and I took pictures of Brooke with him, daddy and grandpa. She loves all of the Hanks...they've always been so nice to her. It was a nice visit.

Thought we were finished!

Well...after seeing doctor's every day except for Sunday...I thought today would be our last visit for the week. Wrong. Saw the Hematologist today and he ordered the GCSF shot, which requires insurance approval, so we go back tomorrow morning to get the shot. MAYBE. UNM had left me a voicemail saying that they were really pushing Denver to see us in the next week or so and if that plays out, she can't have the shot. They need to see the blood in its normal state. So I called our nurse in Albq. and left her a message stating that Brooke is scheduled to get the shot at 10:30 manana so I need to know something by then. Hope she checked her messages! Not sure what tomorrow will hold?

Brooke had a great day with nanny. Have I mentioned lately how thankful we are to have her and ma and papa? We couldn't do this without the help and support from our family!! Brooke was happy and playful all day and is eating much better; however, she is pale and washed out looking. I'm sure she's a little anemic. When the blood levels get thin, bleeding is common and she spot bleeds which doesn't help matters. She also has several bruises that we're closely watching. The Hematologist lowered her Coumadin dose to 4 Mb through Monday and ordered an INR check for Tuesday. We're beginning to look like a Coumadin factory with our 2.5's, 5's and now 4's. So thankful the manufacturers color code the pills!

Thank you all for the continued prayers and words of encouragement. We are truly seeing and feeling the effects of your prayers. Please keep them coming our way. We serve an awesome and compassionate God...and when we hurt - He hurts. We are so thankful to have our Faith!!!

Good Doctor's Visits Yesterday - INR - One More Today

Our appointments went well yesterday. Brooke saw her PCP for a re-check and had a consult with the Infectious Disease doctor. The infection looks much better so no hospitalization was required. THANK YOU FOR THE PRAYERS!! Both doctors feel the area may be a Hematoma (localized swelling filled with blood) due to her blood being so thin lately. The ID doctor says he typically halves Coumadin dosing when his patients are on antibiotics because the two meds don't work well together. It has something to do with the liver. We had never been told this but shared it with our home health nurses and will share it with the Hematologist today at our appointment. The plan is to continue both antibiotics, bathe Brooke in a special antibacterial cleanser that was recommended and see the PCP again in two weeks. He is in contact with the Immunologist in Albq. I love the way he looks at the "full picture" and includes all of Brooke's doctor's in his plan. He's a super nice guy. In fact, Mike liked him so much that we've both decided to use him as our doctor as well. It's nice to find a doctor unafraid to consult with other doctors, able to swallow pride and admit when something is out of his expertise, and to be kind and gentle in the process. I thank God for him!

Brooke's INR was checked yesterday afternoon by our home health nurse and it's back up. 3.7. YIKES! She called the level in to all three doctors and the ID doctor made the call not to give meds last night. The Hematologist will have to determine the route we take from tonight forward. I feel Brooke will most likely get a Neupogen shot (GCSF). Both doctors yesterday agreed this is necessary and the ID doctor feels it is needed every 2-3 months for routine maintenance. The Immunologist agreed. So...we'll see what the Hema. says today. I do believe we're on the right road finally. Now if someone could just figure out what these spots are and how to make them go away!

Thank you for your continued prayers. I'll let you know how today's appointment goes.

Brooke had a good night

Brooke had another good night. No fever. Allergies are really bad this morning but no fever. The infection is looking better. THANK YOU GOD! Keep the prayers coming our way!!!

Second Opinion

Brooke seems to be feeling much better today. No fever last night and she slept well. She stayed with Ma and Papa today and was happy, playful, and got her appetite back. Praise God! Her infection looks a little better, but is not the "drastic" improvement I was hoping for overnight. I took her to see her PCP this afternoon and he has some valid concerns. Plan 1: He added another antibiotic to the one she's already taking and wants to see her in the morning. The Infectious Disease doctor here will also evaluate her. If she's not noticeably better, he will most likely admit her to the hospital and start her on IV antibiotics, which would be plan 2. Please pray that isn't necessary! Plan 3 is giving a shot of GCSF, which isn't pleasant but might help kick her immune system into high gear, at least temporarily. Plan 4 (and we're really praying this never has to happen) would involve sending her to Albq. to have a surgeon evaluate whether or not this cyst needs to be cut. Please pray this isn't the plan!!

Pray for healing, comfort, knowledge, guidance, patience and a solution. An answer would be acceptable. Ha. Your prayers are working because she looks and feels a LOT better today than she did yesterday. Thank you! Please keep up the good work!!

Bad Saturday for Brooke

Yesterday was awful. It started out fine but quickly went downhill. Brooke had one of her "unexplained shaking/blue nail" episodes yesterday morning. Her body gets really cold, then goosebumps appear, lots of shaking like she's cold, her nails turn blue, her breathing is unusual and she does a lot of yawning. Her oxygen stats were low (84) but climbed to 95 within a few minutes. We took her temp. and it was 102, even though she was cold. Once we got her calmed down with daddy holding her - the heat hit. She was hot! We did tylenol and let her sleep it off. This is the same thing she has done twice in the past after the salmonella. Nurses in the hospital witnessed it once and couldn't really figure out what was going on? It's a cross between a seizure and hyperventilating. Called the on-call home health nurse and she felt it was a febrile seizure.

So we decided to do her long infusion (4 hours) since we were off a few weeks due to the INR levels being so high. (Don't need to be putting two needles in a belly when the risk of bleeding is higher than normal.) Upon a trip to potty, I noticed something not right when I wiped her. Turns out she has another one of her spots that had become HUGE and infected practically overnight. We didn't even know she had a spot.It is awful looking! So I called the on-call home health nurse back and she suggested we take her to the ER once the infusion was over. We knew she needed to be on an antibiotic. We put Brooke in bed to finish the infusion and with about 30 minutes left to completion - she had another seizure. Then the fever hit. She doesn't do this with high fever typically. Whatever it is - it's scarey because of the blue nails, labored breathing and oxygen levels. Yep...I have my own oxometer...it helps me get through the big seizures. Best money I ever spent for peace of mind! I can watch her CO2 levels and heart rate with my machine and it's tiny...fits in my purse.

Long story short...we stopped the infusion and spent the next 3.5 hours in the ER. I have to admit...this ER experience was a good one thankfully. The doctor we saw (Dr. Colon from Puerto Rico) was very nice and thorough and he listened to us. They couldn't get an IV started (after 4 sticks) so we drank root beer instead. Ha. XRay was clear. Labs were messed up in the areas we know are messed up. He prescribed Cipro and told us to follow-up with our PCP. I should end the story here, but you have to hear the rest. Pharmacy X was closed at 7:30 when we left the ER so Brooke went without her medicine overnight. I called first thing this morning to see when they opened and was there in line. 45 minutes to fill it, but they didn't have the liquid so we got horse pills that we have to cut in half. Whatever you do...don't get sick after hours in Clovis!

The fever continues today so all Brooke has done is sleep. She's not eating much or drinking much. Fever is low grade but has zapped her of what little energy she usually has. The plan is to call our PCP tomorrow and try to get in for a second opinion. I will also call UNM to report this to our Immunologist and the Infectious Disease doctor. Please pray for healing. For the antibiotic to kick in and knock out the infection. For the fever to subside so Brooke gets her strength back. Pray for an answer to what these spots are! I noticed 3-4 new ones on her bottom this morning. Thank you all for your well wishes...we couldn't make our journey without you on our side!!!

Going to Denver

Dr. Clayton called Monday (the Immunologist) and he is referring Brooke to National Jewish Hospital in Denver. There is a team of doctors there that will evaluate Brooke and make treatment recommendations. The process of getting there will take some time (insurance, scheduling, accomodations, etc.), so the ball is now just starting to roll. Dr. Clayton said to expect at least 6-8 weeks for an appointment. That's what I figure will happen just because it's the most inconvenient time for us. We have Special Olympic state games in Albuquerque the 22nd of May and our trip to Hawaii the first week of June. Neither will be interferred with...they'll have to work around those two times. I really hope this will occur in June so Mike can go with me.

Please pray for guidance for Dr. Clayton as he makes the arrangements. Pray for us to be put with a knowledgable, compassionate team of doctors that will listen to us, be open to what we are saying, and will take some of the existing results and not feel the need to have to start from scratch. Our biggest fear is having to put Brooke through a bunch more tests that cause pain. I pray for doctors without egos. I pray that this team is trusting of what has already been done and will only do tests that are 100% necessary and not treat Brooke like a circus act. (Yes, it happens. We've had doctors wanting to cut a section of her skin out just to look at it under the microscope. NO!) I pray that everyone that comes in contact with us has an understanding with the trauma this places on Brooke and the anxiety levels of all of us. And please pray for strength, patience and tolerance on my behalf.

I'll keep you posted as I know more.

Pray for the Miners

Please pray for the miners and their families in West Virginia. What a tragedy! Both of Mike's grandfathers were miners in Virginia and a lot of his distant family worked in the mines. Mining is a big part of the Hankins and Lowe family history. I can't imagine the impact something like this has on a small community. Please pray for comfort for all of these people.

Doing OK - Mike Home - Where is Brooke

Brooke had a good weekend - thank goodness. It was a little scarey with her INR sitting at 4.5! That's seriously thin blood. Any cut, scrape or a bloody nose could've been super serious. I crammed her full of spinach and broccoli and Pistachio pudding...all the things she loves but usually can't have due to their vitamin K. (Vitamin K is a clotting agent, so people on blood thinners have to watch their intake of foods with vitamin K.) The home health nurse comes tomorrow to re-check her blood. Hopefully the INR level is substantially lower! She went back on her Coumadin last night, so we'll see how it goes. She seems to feel better finally. No fever for about 3 days now, so maybe whatever it was she had has worked its course. Albq. doctors are supposed to call next week with the game plan.

Mike got home mid-afternoon today. YAY! He's been in Austin for an invitational track meet since Thursday...he loved Austin. The bluebonnets were in bloom and he even stopped by the side of the road and picked me two. How sweet is that! I've been to Austin twice, but never in the spring when the bluebonnets are blooming. I would love to see that! We're glad he's home safe and sound.(I knew he'd eventually grow to love my state!)

Brooke was outside when Mike was mowing earlier and he lost her. That's a bad feeling for sure. She had gotten in her car all by herself and was just sitting there, in the garage, with the door closed. How funny is that? So we went for a ride. She cracks us up!

Thank you for your continued prayers!

UNM Appointments - Denver or Houston - Blood too thin - Feeling Bad

We spent Wednesday morning at UNM. Brooke saw her Immunologist, Dr. Clayton, who is the sweetest, kindest man. I just love him and his caring bedside manner. It's refreshing. He had definitely done some research on Brooke's issues before our appointment and had his game plan laid out. He took a lot of blood, most of which had to be sent out of state within x number of hours in order to remain viable. He has some thoughts as to what "might" be causing the high IgM level but he wants the blood work to tell the tale. He didn't know what to think of her spots so he called in an Infectious Disease doctor to evaluate Brooke. Enter - Dr. Martha Muller. WHAT A GODSEND! She seems to be the person we've all be praying for! She's kind, gentle and interested in everything going on. Guess what? She is totally smitten with Neutropenia! Take it on!!! Most doctors run the other direction, but she was like a breath of fresh air. She has some thoughts on various things she saw on Brooke and/or things she briefly read in her chart prior to walking in the room and she wants to do some more reading up on Brooke before she lays out her game plan. She explained things in a way we've never had them explained before and it made sense. I feel so relieved with the visit and I feel we are finally on the right path. Thank you God for putting Dr. Muller in our lives and for Dr. Clayton not giving up on finding the answers we need.

Dr. Clayton will be referring us either to Denver or Houston to see a team of doctors who will evaluate Brooke. While I hate the thought of having to go so far and possibly having to put Brooke through more tests, the possibilities excite me. A second opinion (overall) may be what we need. UNM is pretty much the only place that has ever treated Brooke, with the exception to UMC in Lubbock when she was first born. Please pray for direction for Dr. Clayton as he determines which location will best suit Brooke and her needs.

Can someone please tell me where the switch is? You know...the one that turns off the bad stuff? Enough already!! The home health nurse came yesterday to take Brooke's monthly INR reading. A month ago it was 2.2, which is where they like to see it, but is considerably higher than where Brooke has been in the past. We all felt the INR should've been done sooner than a month later, but we lost that battle. So the results yesterday show her at 4.5. Very thin blood and extremely dangerous. This is so thin that a cut could be tragic. So, no Coumadin last night or tonight and back on the normal dose Saturday and Sunday and a recheck Monday. Brooke is liking it in the sense that we're cramming spinach down her which is a no-no most days. When your blood is thick, you avoid foods with vitamin K because it's a clotting agent and you don't want clotting. With an INR of 4.5 - YOU WANT CLOTTING! So vitamin K is our best friend temporarily. Sad thing is, Brooke doesn't understand any of it. Why mom won't let her eat this or that and now all of a sudden she can have as much of anything she wants. Very confusing to a little girl.

Brooke has felt bad since last Friday. Fever that comes and goes has to be monitored very closely. She seems to be past the 101's and 102's, but the 99's are still very frequent. She's been on an antibiotic for over a week for a skin infection, yet it doesn't seem to be kicking whatever "bug" she has. Maybe the fever is another symptom? Please pray for Brooke. For healing. For comfort. For direction from the doctors. For Mike and I as we tend to her needs.