Here I go again...having to apologize for not posting. I wish I had some eloquent excuse, but I don't. Just summer-time blues. We've been busy riding bikes, going for nightly strolls, planting flowers and just enjoying the wonderful Eastern NM nights.
Brooke is doing good. We leave tomorrow for the Special Olympic state track meet in Albq. This is always fun. We're taking it a little slower this year and with more precautions. I am worried about all of the touching and hugging that special people do! I may have to hand gel Brooke every 2 minutes! But she misses her teammates and is looking forward to doing the "special O." (For those of you who don't know what that is...the athletes always stand up and put their arms in a big O over their heads and yell OOOOOOOOOOO...it's a standing O for ovation.) They get a kick out of it and it's become one of Brooke's trademarks. So much so that I have to email the head of SONM each year to remind her to be sure to do it. When she forgets...it crushes Brooke. It's cute. Opening ceremonies are tomorrow night at 7:00 and she competes at 8:00 Saturday morning. We go to Olympic Village at 10:00 where she plays with the Special Orchestra for as long as we let her. It's another favorite of hers. Then it's off to the SO gift tent to see what all we can buy this year. Last year it was a chair and a yellow stocking cap. You never know. It's a lot of fun overall!!!!
We went camping last weekend...Brooke's first time camping and her first time at Angel Fire. What a gorgeous place! How can anyone not believe in the wonders of God when seeing sights as pretty as that? WOW! If I ever find a spare million laying around the house - it will go to a second home there. It's my favorite spot in NM. Right outside of Angel Fire between Black Lake and the Moreno Valley. Brooke did well other than constantly worrying about the other 8 family members when they weren't in her immediate site. She worries. We slept in the trailor, which is as nice as any motel. Thank goodness for in-laws with nice toys!!!
10 days to Mickey Mouse...and yes, I'm very excited! And you know Brooke is!!! I have everything ready to go except for the packing list. I am really looking forward to my mom going...what a treat for her. After being a care-giver for my dad for so many years - she really deserves the magic that only Disney can offer. I am glad she is going with us.
Please pray for continued health for Brooke and for safe journies for us in our upcoming travels.
Thursday, May 28, 2009
Saturday, May 16, 2009
No one is immune
Did anyone see the Farrah Fawcett story on TV last night? WOW. It was incredible! I noticed that it's on again right now and will be on again tomorrow. You've got to see it! She did a video journal of her experiences over the past several years with her rare type of cancer, the treatments she has endured in LA as well as in Germany, and most importantly - her feelings and how it has changed her life. It was very touching and extremely emotional. I wonder if famous people realize how much they help the cause by making their experiences public? A star can do so much just by speaking out. While none of us would wish any hurt or pain on another human, we should all be thankful to those who try to help the cause by making their personal struggles known to all. It's not easy putting yourself out there like an open book for all to read. But regardless, none of us are immune to the debilitating, horric effects of cancer. Pray for all who have to endure this awful disease. I will add Farrah to my daily prayers.
Wednesday, May 13, 2009
PET Scan scheduled
I apologize that it's taken me so long to update this blog. No excuses. I mean, I have plenty I could throw out there, but none that really matter. The good news is that I finished my class last week and am not going to take anything this summer. I have enough on my plate right now without having to worry about homework! 9 more classes folks!!! This senior can finally begin to see the light at the end of the VERY long tunnel. This has been a 6-year process to date. Time is precious. No hurry.
Brooke is doing well. She's always waiting for us at the door in her hat and sunglasses when we get off work every day ready to go somewhere and do something. We usually wait until it cools off and then go on ride bikes. She loves riding her bicycle (and it's an incredible workout for me). She got to go to our church's annual fireperson appreciation dinner a few weeks ago, which she loves. She loves being around the fire station, the trucks, the people, etc. She did great. This was her first "big" crowd to be around and the second social event she's had in over 4 months. I took her to the high school to visit everyone several weeks ago but I made her wear a mask. The swine flu is very scary! She was excited to see her friends! Mike brought her annual home a few days ago and she's had so much fun looking at people and telling them to "come over." She loves people!
We have our summer doctor's appointments and test dates already scheduled. July 1 and 2 at UNM. We'll see the Immunologist on the 1st and do blood work and then see Dr. Libby on the 2nd. Brooke will also have a PET scan done on the 1st. When the CT scan was done in March, there was one lymph node that was a little concerning to the doctor. He said we would watch it and see what happens. The PET scan is used (in most instances - like ours) to detect cancer. I believe in being honest with you; we're not out of the woods. It doesn't seem that Dr. Libby has a warm fuzzy about all of the negative cancer results. I'm by no means a mind reader, but he's made enough comments for me to say that I believe he thinks there is still a good chance she has Lymphoma. This is primarily why he isn't treating the neutropenia right now. He doesn't want to treat the unknown and potentially run the risk of masking another problem. That's understandable. I pray this isn't the case. I pray it's still side effects of the salmonella and that time will rid her of it and all of the problems that have been associated with it.
I'd be lying if I said we were ok. How could we be? This is hard. It's been the longest, toughest 4 months of our lives! And I feel guilty telling about how we feel when it's sweet little Brookie that has to endure everything. The hardest part is that she doesn't look sick or act sick. Not that I want her to..don't get me wrong, it's just so deceiving. And it's especially difficult to try to explain to her. She doesn't understand why she can't go to school, or to the mall, or to Wal-Mart. She's the innocent and unknowing victim of a invisible illness. That's hard for everyone to comprehend. I get asked all the time if she feels better. She never really felt bad. She's tired a lot, and she fights with her allergies like she always has, but she's happy most of the time, loving all of the time, and super excited about seeing Mickey Mouse.
Speaking of Mickey Mouse...24 more days! I've already warned Mike that super-germ-o-phobe mom will be disinfecting the airplane, the hotel, and all 5 of the parks we'll be visiting so if he's easily ashamed...he better pretend not to know me. Ha. I've got my "bag of germ-fighters" already packed and ready to go. Yes, I've even emailed SWA asking if I can bring a "baby can" of Lysol on the plane. The plane scares me. Disney not so much so. I can clean...that's all any of us can do right now. Keep Brooke's hands and face and mouth clean, and pray.
Well...I better get. We're taking Brooke out to eat tonight because Mike leaves tomorrow for the state track meet in Albuquerque. He'll be gone through Saturday. Please continue to pray for all of us. Ask God to continue to watch over Brooke and to make her feel safe at all times. Ask Him to help Mike and I deal with the stress associated with the unknown. And ask Him to guide us to provide the care Brooke needs. I pray every day for wisdom on my mothering and as a wife. My professor said something in class last week that really has stayed with me. She said, "What do you want your headstone to say?" That says a lot. How we choose to live our lives now indicates how people will remember us forever more. I want my legacy to be one of a Christian woman who was a good mother to a special little girl and a kind and loving wife to her husband.
Thank you God for Brooke and Mike...they complete me!
Brooke is doing well. She's always waiting for us at the door in her hat and sunglasses when we get off work every day ready to go somewhere and do something. We usually wait until it cools off and then go on ride bikes. She loves riding her bicycle (and it's an incredible workout for me). She got to go to our church's annual fireperson appreciation dinner a few weeks ago, which she loves. She loves being around the fire station, the trucks, the people, etc. She did great. This was her first "big" crowd to be around and the second social event she's had in over 4 months. I took her to the high school to visit everyone several weeks ago but I made her wear a mask. The swine flu is very scary! She was excited to see her friends! Mike brought her annual home a few days ago and she's had so much fun looking at people and telling them to "come over." She loves people!
We have our summer doctor's appointments and test dates already scheduled. July 1 and 2 at UNM. We'll see the Immunologist on the 1st and do blood work and then see Dr. Libby on the 2nd. Brooke will also have a PET scan done on the 1st. When the CT scan was done in March, there was one lymph node that was a little concerning to the doctor. He said we would watch it and see what happens. The PET scan is used (in most instances - like ours) to detect cancer. I believe in being honest with you; we're not out of the woods. It doesn't seem that Dr. Libby has a warm fuzzy about all of the negative cancer results. I'm by no means a mind reader, but he's made enough comments for me to say that I believe he thinks there is still a good chance she has Lymphoma. This is primarily why he isn't treating the neutropenia right now. He doesn't want to treat the unknown and potentially run the risk of masking another problem. That's understandable. I pray this isn't the case. I pray it's still side effects of the salmonella and that time will rid her of it and all of the problems that have been associated with it.
I'd be lying if I said we were ok. How could we be? This is hard. It's been the longest, toughest 4 months of our lives! And I feel guilty telling about how we feel when it's sweet little Brookie that has to endure everything. The hardest part is that she doesn't look sick or act sick. Not that I want her to..don't get me wrong, it's just so deceiving. And it's especially difficult to try to explain to her. She doesn't understand why she can't go to school, or to the mall, or to Wal-Mart. She's the innocent and unknowing victim of a invisible illness. That's hard for everyone to comprehend. I get asked all the time if she feels better. She never really felt bad. She's tired a lot, and she fights with her allergies like she always has, but she's happy most of the time, loving all of the time, and super excited about seeing Mickey Mouse.
Speaking of Mickey Mouse...24 more days! I've already warned Mike that super-germ-o-phobe mom will be disinfecting the airplane, the hotel, and all 5 of the parks we'll be visiting so if he's easily ashamed...he better pretend not to know me. Ha. I've got my "bag of germ-fighters" already packed and ready to go. Yes, I've even emailed SWA asking if I can bring a "baby can" of Lysol on the plane. The plane scares me. Disney not so much so. I can clean...that's all any of us can do right now. Keep Brooke's hands and face and mouth clean, and pray.
Well...I better get. We're taking Brooke out to eat tonight because Mike leaves tomorrow for the state track meet in Albuquerque. He'll be gone through Saturday. Please continue to pray for all of us. Ask God to continue to watch over Brooke and to make her feel safe at all times. Ask Him to help Mike and I deal with the stress associated with the unknown. And ask Him to guide us to provide the care Brooke needs. I pray every day for wisdom on my mothering and as a wife. My professor said something in class last week that really has stayed with me. She said, "What do you want your headstone to say?" That says a lot. How we choose to live our lives now indicates how people will remember us forever more. I want my legacy to be one of a Christian woman who was a good mother to a special little girl and a kind and loving wife to her husband.
Thank you God for Brooke and Mike...they complete me!
Saturday, April 25, 2009
No Track Meet
Today, my heart aches. We didn't take Brooke to her Special Olympic track meet in Carlsbad as planned. That nagging mother's intuition told me not to do it. She didn't look like she felt well yesterday and she had a really sleepless night last night. Something just isn't right and I didn't want to tire her out with 6 hours of driving. And while I know I made the right decision, it hurts me and confuses her. She was so excited about going and seeing her friends. I wish someone would tell me how to explain all of this to my daughter! She doesn't feel sick, nor does she look sick, and we haven't told her she is - so how do we justify all of this to her? She misses her friends, and Special Olympics, going to church, etc. I pray that God help us with this. It's so hard!
Thursday, April 23, 2009
The Best Day of My Life
This was taken from our church bulletin years ago and it hangs on my bulletin board at work. I read it this morning and wanted to share the words with you. Enjoy.
"Today, when I awoke, I suddenly realized that this is the best day of my life, ever. There were times when I wondered if I would make it to today; but I did. And because I did I’m going to celebrate!
Today, I’m going to celebrate what an unbelievable life I have had so far: the accomplishments, the many blessings, and, yes, even the hardships because they have served to make me stronger. I will go through this day with my head held high and a happy heart. I will marvel at God’s seemingly simple gifts: The morning dew, the sun, the clouds, the trees, the flowers, the birds.
Today none of these miraculous creations will escape my notice. Today, I will share my excitement for life with other people. I’ll make someone smile. I’ll go out of my way to perform an unexpected act of kindness for someone I don’t even know. Today, I’ll give a sincere compliment to someone who seems down. I’ll tell a child how special he is, and I’ll tell someone I love just how deeply I care for them and how much they mean to me.
Today is the day I quit worrying about what I don’t have and start being grateful for all the wonderful things God has already given me. I’ll remember that to worry is just a waste of time because my faith in God and his Divine Plan ensures everything will be just fine. And tonight before I go to bed, I’ll go outside and raise my eyes to the heavens. I will stand in awe at the beauty of the stars and the moon, and I will praise God for these magnificent treasures.
As the day ends and I lay my head down on my pillow, I will thank the Almighty for the best day of my life. And I will sleep the sleep of a contented child, excited with expectation because I know tomorrow is going to be the best day of my life, ever!"
Author unknown
"Today, when I awoke, I suddenly realized that this is the best day of my life, ever. There were times when I wondered if I would make it to today; but I did. And because I did I’m going to celebrate!
Today, I’m going to celebrate what an unbelievable life I have had so far: the accomplishments, the many blessings, and, yes, even the hardships because they have served to make me stronger. I will go through this day with my head held high and a happy heart. I will marvel at God’s seemingly simple gifts: The morning dew, the sun, the clouds, the trees, the flowers, the birds.
Today none of these miraculous creations will escape my notice. Today, I will share my excitement for life with other people. I’ll make someone smile. I’ll go out of my way to perform an unexpected act of kindness for someone I don’t even know. Today, I’ll give a sincere compliment to someone who seems down. I’ll tell a child how special he is, and I’ll tell someone I love just how deeply I care for them and how much they mean to me.
Today is the day I quit worrying about what I don’t have and start being grateful for all the wonderful things God has already given me. I’ll remember that to worry is just a waste of time because my faith in God and his Divine Plan ensures everything will be just fine. And tonight before I go to bed, I’ll go outside and raise my eyes to the heavens. I will stand in awe at the beauty of the stars and the moon, and I will praise God for these magnificent treasures.
As the day ends and I lay my head down on my pillow, I will thank the Almighty for the best day of my life. And I will sleep the sleep of a contented child, excited with expectation because I know tomorrow is going to be the best day of my life, ever!"
Author unknown
Wednesday, April 22, 2009
All test results in!
Brooke does not have cancer. All of the test results are in and are negative. Praise God! It has been one of the longest, most exhausting days of my life! I feel like I've been run over by a truck! This tough momma has done nothing but cry all day. My stomach is torn up, I feel like I'm aging by the minute, and I had to get my hair colored last night to cover the gray. At noon, I did what any depressed woman would do...I went shopping. (Don't tell Mike!)
Seriously, I think the past 3 months of stress came to a head today. It turns out UNM had the rest of the test results at some point between last week and today and never bothered to call. This was the icing on the cake for me. I lost it this morning with Dr. Libby's PA. I know none of this is her doing, but she happened to be on the other end of the line when I called. First of all, if I hadn't been so diligent in ensuring things got done - would they have gotten done? If I hadn't called to check on the results repeatedly - would they have ever called me? It’s taken three months to figure out that Brooke does not have cancer, and I've had to initiate 75% of the process. What is wrong with the system? What if it had been cancer? 3 months is a long time! We've been told since day 1 how dangerous neutropenia is, yet the process to run 4 tests takes them 3 months. It makes no sense to me. And not so much as a phone call to let us know that cancer had been ruled out. Inexcusable. I told the PA all of this. I think she was crying with me at one point during our conversation. I asked her to put herself in my shoes and asked her, as a mother, how she would feel not getting a call with the results after worrying the past two weeks? How would she feel having to seclude her child who wants nothing more than to be around people and be able to offer no explanation to the child as why? And how would she feel worrying and waiting for 3 months for a test date, or test results, or some explanation as to what the future might hold? I even asked her about compassion and about doing the right thing. I was never ugly to her, nor did I say anything that wasn't brought about by their actions. I simply stated the facts. And I felt better in doing so.
About 4 hours after my complete melt-down with the PA, Dr. Libby called. Thankfully, my blood pressure had come down by that time and the tears had temporarily dried up. He was very nice and apologized for not calling me. To make a long story short - he has no answers, which is no shocker. Anyone who knows Brooke knows this is how it would turn out. She's a rare and beautiful medical mystery. The doctor said the neutropenia could be caused by a virus in her body, such as Epstein Barre, or it could leave as quickly as it came. He doesn't know. He doesn't want to treat it right now, he just wants to watch it and monitor it and see what happens. We will see him and the Immunologist in late June/early July for blood work and another CT scan.
In the meantime...if Brooke gets an infection, she has to take a GCSF (Neupogen) shot to boost her bone marrow. (A trip to the ER.) This would be the treatment she would be taking if the doctor chose to go that route. From what I understand, Neupogen is a hormone that stimulates bone marrow. The shots are done SUBQ, have nasty side effects in some people, can be very painful, and are super-expensive. We also talked about the pending dental surgery; he told me to go ahead and work on getting it scheduled but that we would have to work with him prior to the surgery to get Brooke's neutrophil levels up. It's never easy with Brooke, nor does she ever get anything that can "be fixed." And yes, it does get harder as time goes by. The medical problems she has developed over the past 5 years are BIGGIES! Now you know why I'm a basket case. Or is that a nut case?? As you can see, we are still in a super dangerous position, but it looks like its one we will have to live with. One day at a time and with God's help.
The good news: Brooke is going back to school part time next week. YEA. She's going to be so excited! Dr. Libby wants us to slowly start re-introducing her into society and see what happens. She also is going to the area Special Olympic track meet Saturday in Carlsbad. We leave at 6:00 AM if any one wants to go.
Thanks for the prayers – please keep them coming. Brooke does not have cancer, but she still has plenty to contend with. What a tough little girl!!
Seriously, I think the past 3 months of stress came to a head today. It turns out UNM had the rest of the test results at some point between last week and today and never bothered to call. This was the icing on the cake for me. I lost it this morning with Dr. Libby's PA. I know none of this is her doing, but she happened to be on the other end of the line when I called. First of all, if I hadn't been so diligent in ensuring things got done - would they have gotten done? If I hadn't called to check on the results repeatedly - would they have ever called me? It’s taken three months to figure out that Brooke does not have cancer, and I've had to initiate 75% of the process. What is wrong with the system? What if it had been cancer? 3 months is a long time! We've been told since day 1 how dangerous neutropenia is, yet the process to run 4 tests takes them 3 months. It makes no sense to me. And not so much as a phone call to let us know that cancer had been ruled out. Inexcusable. I told the PA all of this. I think she was crying with me at one point during our conversation. I asked her to put herself in my shoes and asked her, as a mother, how she would feel not getting a call with the results after worrying the past two weeks? How would she feel having to seclude her child who wants nothing more than to be around people and be able to offer no explanation to the child as why? And how would she feel worrying and waiting for 3 months for a test date, or test results, or some explanation as to what the future might hold? I even asked her about compassion and about doing the right thing. I was never ugly to her, nor did I say anything that wasn't brought about by their actions. I simply stated the facts. And I felt better in doing so.
About 4 hours after my complete melt-down with the PA, Dr. Libby called. Thankfully, my blood pressure had come down by that time and the tears had temporarily dried up. He was very nice and apologized for not calling me. To make a long story short - he has no answers, which is no shocker. Anyone who knows Brooke knows this is how it would turn out. She's a rare and beautiful medical mystery. The doctor said the neutropenia could be caused by a virus in her body, such as Epstein Barre, or it could leave as quickly as it came. He doesn't know. He doesn't want to treat it right now, he just wants to watch it and monitor it and see what happens. We will see him and the Immunologist in late June/early July for blood work and another CT scan.
In the meantime...if Brooke gets an infection, she has to take a GCSF (Neupogen) shot to boost her bone marrow. (A trip to the ER.) This would be the treatment she would be taking if the doctor chose to go that route. From what I understand, Neupogen is a hormone that stimulates bone marrow. The shots are done SUBQ, have nasty side effects in some people, can be very painful, and are super-expensive. We also talked about the pending dental surgery; he told me to go ahead and work on getting it scheduled but that we would have to work with him prior to the surgery to get Brooke's neutrophil levels up. It's never easy with Brooke, nor does she ever get anything that can "be fixed." And yes, it does get harder as time goes by. The medical problems she has developed over the past 5 years are BIGGIES! Now you know why I'm a basket case. Or is that a nut case?? As you can see, we are still in a super dangerous position, but it looks like its one we will have to live with. One day at a time and with God's help.
The good news: Brooke is going back to school part time next week. YEA. She's going to be so excited! Dr. Libby wants us to slowly start re-introducing her into society and see what happens. She also is going to the area Special Olympic track meet Saturday in Carlsbad. We leave at 6:00 AM if any one wants to go.
Thanks for the prayers – please keep them coming. Brooke does not have cancer, but she still has plenty to contend with. What a tough little girl!!
Saturday, April 18, 2009
Results: One down / One to go
I was hoping to post when we had all of the test results back, but since it appears that it will take longer than expected, I decided to go ahead and report on what we do know. Brooke's bone marrow is normal; it looks good. Praise God! We are still waiting on the results from the actual bone biopsy. I talked to the PA last week and she said it is still in the lab being evaluated. I'll give it until next Wednesday, which will be two weeks from the test date, and will start my phone calls again for results.
Mom and I had a garage sale today and are glad that's behind us! I'm both ashamed and amazed at the amount of JUNK that came out of our house. Actually, most of it came out of our "former residences." I had made a rule that the new house be clutter-free. I have the feeling my house is smiling right now. It's a good feeling to be rid of the junk! We set out to raise enough money to be able to eat at Disneyworld. Ha. I think we'll be ok. In fact, we did very well -far better than expected. You just never know with garage sales! Glad it's over! I have homework I need to get done!
I'll post again next week when hopefully we'll have all of the test results back. Keep the prayers coming our way friends. We love and appreciate all of you!!
M-G-B
Mom and I had a garage sale today and are glad that's behind us! I'm both ashamed and amazed at the amount of JUNK that came out of our house. Actually, most of it came out of our "former residences." I had made a rule that the new house be clutter-free. I have the feeling my house is smiling right now. It's a good feeling to be rid of the junk! We set out to raise enough money to be able to eat at Disneyworld. Ha. I think we'll be ok. In fact, we did very well -far better than expected. You just never know with garage sales! Glad it's over! I have homework I need to get done!
I'll post again next week when hopefully we'll have all of the test results back. Keep the prayers coming our way friends. We love and appreciate all of you!!
M-G-B
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