We finally have a date for the bone marrow biopsy: Wednesday, April 8th at 2:30 (UNM Hospital in Albuquerque). While we dread this nasty test, we're ready to get it done so we can move on. We're about a week shy of hitting the 3-month mark with this blood problem and still have no answer. The lack of an answer doesn't surprise us because --- it's Brooke. We do; however, want to at least move on with life the best we can. Brooke is more than ready to go back to school and start interacting with people again. We've slowly started taking her out some, which she has enjoyed. We'll get the test done, wait for her to heal and then hopefully she can go back to school on a part time basis. We'll have to play it by ear. I guess it pretty much depends on what the test results are.
Please pray for her comfort during this test! This one really makes me nervous. They won't be putting her to sleep like we were originally told, which concerns me. Conscious-sedation will be used instead. I called the doctor Thursday and left word for him to call me. I need to be assured that Brooke will not feel this nor will Mike and I be expected to hold her down. Brooke doesn't understand what's going on or even why she has to have all of these awful things done to her. The sedation needs to be enough to make her sleep while the test is being done. I realize Brooke isn't the typical patient, and that this isn't the usual way this test is done, but I hope and pray they realize it too! Pray for everyone involved. Ask that the team understand what is needed for Brooke and what will be in her best interest. Pray for comfort for her and for successful test results.
Thank you all so much for hanging in there with us the past 3 months (and the past 19 years). We couldn't keep our chins up without friends like you praying for us. Thank you from the botttom of our hearts.
Sunday, March 29, 2009
Thursday, March 19, 2009
We're still here!
Sorry it's taken two weeks for me to post...I really haven't had anything new to report. I emailed Dr. Libby for status last Friday and heard back from him Saturday. He thanked me for reminding him to schedule the test. OOPS...guess he had forgotten? As of today I haven't heard a peep from UNM. Honestly, I'm ready to get this thing over with!
Brooke continues to do well - Praise the Lord! She turned 19 on the 9th and celebrated with a birthday party with our family. She had a great time! She loves being around family more than anything else. What a blessing she is to all of us.
We went to eat at IHop last night (5th time taking her out since January) and she saw a friend from school. She went nuts! She was sooooo excited. It brings home the realization of how much she misses people and socializing. Hopefully, once the test is over and as long as Dr. Libby gives the ok, we'll send her back to school part time. She needs that. She needs people!
Thank you for your continued prayers and words of encouragement.
Love to you all -
Gena
Brooke continues to do well - Praise the Lord! She turned 19 on the 9th and celebrated with a birthday party with our family. She had a great time! She loves being around family more than anything else. What a blessing she is to all of us.
We went to eat at IHop last night (5th time taking her out since January) and she saw a friend from school. She went nuts! She was sooooo excited. It brings home the realization of how much she misses people and socializing. Hopefully, once the test is over and as long as Dr. Libby gives the ok, we'll send her back to school part time. She needs that. She needs people!
Thank you for your continued prayers and words of encouragement.
Love to you all -
Gena
Friday, March 6, 2009
Bone Marrow Biopsy
I talked to Dr. Libby this morning. He wants Brooke to have a bone marrow biopsy to see if the marrow will give him any clues as to what's going on. The bone marrow is where neutrophil comes from and if the marrow is damaged in any way, neutrophil levels can be greatly reduced. I know when you think "bone marrow" the first word that typically comes to mind is leukemia. Dr. Libby has checked for this as well as lymphoma, which is a form of blood cancer common with people that have Common Variable Immune Deficiency (CVID) like Brooke. He does not feel she has cancer. He told me he read that people with CVID are suspectible to Neutropenia. While the biopsy isn't what we wanted Brooke to have to endure, it's something we assumed would have to be done sooner or later. Dr. Libby said he will work at getting this set up and that it will most likley be week after next. She will be completely sedated for this - thank goodness! I've heard this is very painful! Please pray for endurance for her and for comfort before/during/after the procedure.
We talked in great length about what we can do in the future, what we should do, etc. He doesn't want to give the shots I've talked about in previous blogs since she is currently not experiencing any recurring infections. I told him she may not be due to being home-bound, but he doesn't think that's the case. He told me she's still around plenty of germs. He said as odd as it sounds, we need to get her back out in the public to see how she does. If she develops an infection - we treat it. Sounds awfully scary to me!! I'm going to keep things like they currently are until after the next procedure to ensure I keep her healthy for it. We'll play "the future" by ear!
I learned that the spleen can go down in size after it's been enlarged, which is something I've been wondering about. That was comforting! Her liver has gone back to normal so maybe the spleen will too! I still can't help but think this is all salmonella-related and maybe after time...things can get back to better, if not normal. They say salmonella can linger in the body for over a year. Give us strength!! I hate it and hate even more what it's done to my daughter!
I am completely honest when I say that "Brooke has never been text book on ANYTHING." Mike and I are used to that. We have never expect an answer right away, if at all. This is just how Brooke is. Bless her! I told Dr. Libby how much we appreciated him helping her and thanked him for being so kind to us. That's not always the case...and is even sadder when people like Brooke have so few choices in their health care. Many times, people are afraid of them. What a loss!! I know Brooke is a challenge, but she's also a person who deserves the very best that life has to offer.
Lastly and most importantly, I told Doctor Libby we are going to see Mickey Mouse on June 6th and asked if he had any problem with that. He laughed and said it should be ok. Brooke "TOLD" us we were going about a week before we knew anything was wrong with her. She communicated her wants very plainly! So preparations for the Disneyworld trip have helped keep me focused on something other than worry. I am planning the most incredible trip for her. She deserves it! We have the countdown chain in her bedroom color-coded by month with Mickey's ears at the tail end of it. It was 119 links long when I made it. Yep, I hand cut and taped all 119 links! Brooke's like her mom in that she does well with visual aids. She doesn't understand what 3 months from today means, but a chain with links helps her see amounts of time. She still asks to get her suitcase down at least once a week. Ha!
Please pray for a positive outcome on the biopsy. Ask God to be there with Brooke holding her and making her feel safe. Pray for minimal pain and for skilled hands to work on her. And if you don't think me too selfish to ask this...pray for the salmonella and all of its awful effects to vanish once and for all. For white blood levels to be restored to normal counts. And most importantly, for health and strength for this precious child.
In His name I pray -
AMEN!
We talked in great length about what we can do in the future, what we should do, etc. He doesn't want to give the shots I've talked about in previous blogs since she is currently not experiencing any recurring infections. I told him she may not be due to being home-bound, but he doesn't think that's the case. He told me she's still around plenty of germs. He said as odd as it sounds, we need to get her back out in the public to see how she does. If she develops an infection - we treat it. Sounds awfully scary to me!! I'm going to keep things like they currently are until after the next procedure to ensure I keep her healthy for it. We'll play "the future" by ear!
I learned that the spleen can go down in size after it's been enlarged, which is something I've been wondering about. That was comforting! Her liver has gone back to normal so maybe the spleen will too! I still can't help but think this is all salmonella-related and maybe after time...things can get back to better, if not normal. They say salmonella can linger in the body for over a year. Give us strength!! I hate it and hate even more what it's done to my daughter!
I am completely honest when I say that "Brooke has never been text book on ANYTHING." Mike and I are used to that. We have never expect an answer right away, if at all. This is just how Brooke is. Bless her! I told Dr. Libby how much we appreciated him helping her and thanked him for being so kind to us. That's not always the case...and is even sadder when people like Brooke have so few choices in their health care. Many times, people are afraid of them. What a loss!! I know Brooke is a challenge, but she's also a person who deserves the very best that life has to offer.
Lastly and most importantly, I told Doctor Libby we are going to see Mickey Mouse on June 6th and asked if he had any problem with that. He laughed and said it should be ok. Brooke "TOLD" us we were going about a week before we knew anything was wrong with her. She communicated her wants very plainly! So preparations for the Disneyworld trip have helped keep me focused on something other than worry. I am planning the most incredible trip for her. She deserves it! We have the countdown chain in her bedroom color-coded by month with Mickey's ears at the tail end of it. It was 119 links long when I made it. Yep, I hand cut and taped all 119 links! Brooke's like her mom in that she does well with visual aids. She doesn't understand what 3 months from today means, but a chain with links helps her see amounts of time. She still asks to get her suitcase down at least once a week. Ha!
Please pray for a positive outcome on the biopsy. Ask God to be there with Brooke holding her and making her feel safe. Pray for minimal pain and for skilled hands to work on her. And if you don't think me too selfish to ask this...pray for the salmonella and all of its awful effects to vanish once and for all. For white blood levels to be restored to normal counts. And most importantly, for health and strength for this precious child.
In His name I pray -
AMEN!
Thursday, March 5, 2009
Message from Dr. Libby
We had a message from Dr. Libby when we got home tonight. He said the blood tests were the same and the mono test was negative. He asked me to call him. I'll give him a call tomorrow and will let you all know as I know more.
Wednesday, March 4, 2009
No word yet
I received an email from the doctor today stating he would call me tomorrow afternoon with Brooke's latest blood test results. Guess he's been busy! I'll post as soon as I know something.
Brooke is still struggling with allergies...mom too. And talk about having cabin fever! We pretty much have to go for a car ride every night now. And then she doesn't want to come back home. She wants to go see her "friends" as she signs it to us. Poor baby. Can you blame her? She's used to going and doing and seeing. She turns 19 on Monday...where has the time gone? What an incredible 19 years its been!
Good news: You can now post comments but you have to do it anonymously. Thanks for the tip Amberly.
Brooke is still struggling with allergies...mom too. And talk about having cabin fever! We pretty much have to go for a car ride every night now. And then she doesn't want to come back home. She wants to go see her "friends" as she signs it to us. Poor baby. Can you blame her? She's used to going and doing and seeing. She turns 19 on Monday...where has the time gone? What an incredible 19 years its been!
Good news: You can now post comments but you have to do it anonymously. Thanks for the tip Amberly.
Saturday, February 28, 2009
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
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
Thursday, February 26, 2009
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
Thanks for the prayer warriors diligently praying on our behalf!
God Bless you all!!
Gena
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