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
Wednesday, April 15, 2009
Still waiting...
I know many of you are wondering about the test results...so are we. No word from UNM yet. I called and left the doctor a message Monday, but I'm not sure he got it. Yesterday I called twice and actually spoke to a person the second time. I was sure he would get the message and call last night but he never did. Today, my plan of attack includes: two more calls (maybe three)and an email directly to the doctor. Hopefully one of these methods will reach him.
Will keep you all posted.
Will keep you all posted.
Thursday, April 9, 2009
We're Home
Thank you - thank you - thank you for the prayers! They saw us through the stress and worry of yesterday. We serve an awesome and caring God.
We saw the dentist yesterday morning and prayers were answered! Dr. Espinoza attempted to get x-rays on Brooke but her bleeding was so severe she couldn't get it done. I think seeing is more convincing that hearing about something over and over. She suggested total dental restoration surgery, which means putting Brooke to sleep at UNM and fixing everything all at once. PRAISE THE LORD! Her teeth tear up quicker than Mike and I can get them fixed, and now that neutropenia is involved...we would never see the end. She even said they will pull the wisdom tooth. HOORAY! Such relief. She wrote us a script for a numbing creme to use on Brooke's gums to help with the gingivitis. She was really sweet. Once we have an idea of what the next step is with Brooke and the neutropenia, I will have a better idea on when to set up dental surgery.
The bone marrow biopsy is over, which is a huge relief. Brooke handled it like a pro and is doing great. In true Brooke form, she has yet to complain; in fact, she hasn't even noticed the hole in her hip or the bandage. She's amazing!! The procedure went well and Brooke handled the sedation as good as could be expected. I was allowed to go in with her in order to comfort her, but NO - I didn't watch! I can't say enough kind words about Dr. Libby. He's a very compassionate man and was so kind and gentle with Brooke. That is so comforting, especially when your nerves are on edge. Overall, I couldn't have asked for a better group of people caring for Brooke. The two sedation nurses were great and listened to everything I told them about past sedation experiences. We should have the test results Monday afternoon.
Mike and I sincerely appreciate each and every one of you. The prayers, the calls, the emails, the texts, the hugs and the smiles are what keep us going. I thank God for having all of you in our lives. We thank you and Brooke thanks you!
We saw the dentist yesterday morning and prayers were answered! Dr. Espinoza attempted to get x-rays on Brooke but her bleeding was so severe she couldn't get it done. I think seeing is more convincing that hearing about something over and over. She suggested total dental restoration surgery, which means putting Brooke to sleep at UNM and fixing everything all at once. PRAISE THE LORD! Her teeth tear up quicker than Mike and I can get them fixed, and now that neutropenia is involved...we would never see the end. She even said they will pull the wisdom tooth. HOORAY! Such relief. She wrote us a script for a numbing creme to use on Brooke's gums to help with the gingivitis. She was really sweet. Once we have an idea of what the next step is with Brooke and the neutropenia, I will have a better idea on when to set up dental surgery.
The bone marrow biopsy is over, which is a huge relief. Brooke handled it like a pro and is doing great. In true Brooke form, she has yet to complain; in fact, she hasn't even noticed the hole in her hip or the bandage. She's amazing!! The procedure went well and Brooke handled the sedation as good as could be expected. I was allowed to go in with her in order to comfort her, but NO - I didn't watch! I can't say enough kind words about Dr. Libby. He's a very compassionate man and was so kind and gentle with Brooke. That is so comforting, especially when your nerves are on edge. Overall, I couldn't have asked for a better group of people caring for Brooke. The two sedation nurses were great and listened to everything I told them about past sedation experiences. We should have the test results Monday afternoon.
Mike and I sincerely appreciate each and every one of you. The prayers, the calls, the emails, the texts, the hugs and the smiles are what keep us going. I thank God for having all of you in our lives. We thank you and Brooke thanks you!
Saturday, April 4, 2009
Neutropenia and Teeth Problems
Severely neutropenic people can develop teeth problems, and that's just what we didn't need! Prior to this blood issue, Brooke still had two cavities that needed fixed and a wisdom tooth with a hole in it that needs to be extracated. Dentists won't touch her until the blood issues are resolved. And neutropenia causes additional dental problems. We can't win! Over the last three months, Brooke has had 3 more teeth pop up with cavities or fillings that are falling out and she has inflamed gums that bleed any time you brush her teeth. I was showing my mom the awful state of her gums yesterday when she noticed an abcess. I have never seen one. The tooth below the abcess is now loose because of the abcess. So I immediatly went about trying to find someone to help us. Dr. Luu was out town, so I called two other doctors who were also out of the office. I knew I couldn't take her to urgent care or to the ER, so I did what comes pretty natural to me these days...I started crying. Out of desperation, I called our dentist in Albuquerque who (to my knowledge) is not even open on Fridays. She was there! She was very sweet, and helpful and even called the Hematologist to visit with him about Brooke's teeth. She called me back and told me she had called in an antibiotic and a special mouth rinse to use while brushing. Thank goodness!!! She asked to see Brooke for an evaluation on Wednesday. Brooke's going to love us for that. And to have to do it cold turkey (without sedation)...ugh.
Then, as if Dr. Libby sensed he better return a call to me or else I'd keep calling every day until he did...he finally called. He answered the three questions I had regarding the bone marrow test on Wednesday. "Yes, she will be completely asleep. No, she won't feel anything, and no, she will not have any memory of it." THANK GOODNESS. I breathed a deep sigh of relief. That was really weighing on me heavy.
I believe I'm on to something...think I've figured out how to communicate with doctors. CRY! Just let her rip!!! I bawled to the dentist and then bawled again to the hematologist and managed to have everything work just the way it needed to (for a change). Dr. Libby was very kind and even complimented me on being a good mother. I appreciate that, but I told him that it's very frustrating not to be able to do anything to help your child. Is healthcare this complicated for everyone? Why is that??
On a positive note, Brooke looks better today than she has the past several days. She's had a slight cough that I haven't noticed as much today. The antibiotic should help that. She's more rested and her eyes are bright again. She's still looking forward to seeing Mickey Mouse in June. We keep this as our focal point to keep our minds on something positive and fun. Thank you Ken, Sharon, and Debbie and Buddy for the Mickey treats! We appreciate the continued prayers, the kind words, and the thoughts. Please keep them coming!!! Wednesday is going to be tough! Hard on Brooke and mentally and physically exhausting on the rest of us. We will drive to Edgewood Tuesday night and spend the night at the Hankins Hotel (Rick and Vera's house), eat a huge breakfast around 6:00 AM since Brooke can't eat or drink for 8 hours prior to the test, and then drive in to the dentist at 8:30. We have to be at UNM at 1:30 and the test is scheduled for 2:30. We will spend the night with Rick and Vera again Wednesday night and come home Thursday. Dr. Libby said test results usually take 3 days, so I'm counting on a week. (lessons learned from the past 3 months)
Please pray for a good outcome on Wednesday. Pray that Brooke is comforted and that Mike and I are able to help control any discomfort she has following the test. Ask God to wrap his loving arms around Brooke to keep her safe and protected.
Then, as if Dr. Libby sensed he better return a call to me or else I'd keep calling every day until he did...he finally called. He answered the three questions I had regarding the bone marrow test on Wednesday. "Yes, she will be completely asleep. No, she won't feel anything, and no, she will not have any memory of it." THANK GOODNESS. I breathed a deep sigh of relief. That was really weighing on me heavy.
I believe I'm on to something...think I've figured out how to communicate with doctors. CRY! Just let her rip!!! I bawled to the dentist and then bawled again to the hematologist and managed to have everything work just the way it needed to (for a change). Dr. Libby was very kind and even complimented me on being a good mother. I appreciate that, but I told him that it's very frustrating not to be able to do anything to help your child. Is healthcare this complicated for everyone? Why is that??
On a positive note, Brooke looks better today than she has the past several days. She's had a slight cough that I haven't noticed as much today. The antibiotic should help that. She's more rested and her eyes are bright again. She's still looking forward to seeing Mickey Mouse in June. We keep this as our focal point to keep our minds on something positive and fun. Thank you Ken, Sharon, and Debbie and Buddy for the Mickey treats! We appreciate the continued prayers, the kind words, and the thoughts. Please keep them coming!!! Wednesday is going to be tough! Hard on Brooke and mentally and physically exhausting on the rest of us. We will drive to Edgewood Tuesday night and spend the night at the Hankins Hotel (Rick and Vera's house), eat a huge breakfast around 6:00 AM since Brooke can't eat or drink for 8 hours prior to the test, and then drive in to the dentist at 8:30. We have to be at UNM at 1:30 and the test is scheduled for 2:30. We will spend the night with Rick and Vera again Wednesday night and come home Thursday. Dr. Libby said test results usually take 3 days, so I'm counting on a week. (lessons learned from the past 3 months)
Please pray for a good outcome on Wednesday. Pray that Brooke is comforted and that Mike and I are able to help control any discomfort she has following the test. Ask God to wrap his loving arms around Brooke to keep her safe and protected.
Subscribe to:
Posts (Atom)