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.