In approximately 2 months (April 25, 2009 starting 8am at Kiwani’s Park in Tempe, AZ) the Frank and Kamarah Adams’ family are excited to walk with our family and friends in Team MAMA Lou’s 2nd Great Strides Walk. Great Strides is a walk/fundraiser event to support Cystic Fibrosis. Cystic Fibrosis matters to us because our daughter Maelee was diagnosed with this chronic genetic disease it at 6 weeks old. I told a piece of that story last year (Last year’s piece of Maelee’s CF story) if you want to read it.
Maelee’s update currently is this:
*She continues to take pancreatic enzyme’s with everything she eats. The deal with CF is that the CF person’s body creates a thick mucus that coats all of their organs, although in the long run and for most this mucus most severely effects the lungs it does coat all the organs including the pancreas. A non CF person has natural enzymes released from their pancreas to help them digest their food and absorb the nutrients from it. Maelee’s pancreas being blocked with mucus does not give her the enzymes she needs to digest her food so that is why she takes them with all food she eats. Otherwise she would get any or all of the following; diarrhea, stomach ache, gas (and if not taken at all with any food she would not gain weight and be malnourished). She has always taken these enzymes like a champ. In luxurious circumstances she takes them in applesauce, on the go we pour them straight into her mouth from a capsule – either way like all things Frank and I have worried about as parents with Maelee, she is way to busy and going to care about having to take the enzymes and has always done well with them. Since last year we have heard of some adults with CF who have “grown out” of needing enzymes so that is exciting news for Maelee.
*She takes special CF vitamins in the morning. These vitamins help insure that because of her bodies inability to absorb 100% of the nutrients she eats even with enzymes that she will still have the amount she needs to keep her body healthy and strong.
*In April of 2008 Maelee had a throat culture (a swab of the deep back of her throat that gets sent to a lab and analyzed) done that came back showing a growth of pseudomonas. Pseudomonas is a bacteria that can cause cold like symptoms in anyone who gets it passed to them, but it is especially hard to get out of the thick CF mucus that is present in the lungs of those with CF. Even though Maelee had “severe cold like symptoms” for only 2 weeks back in April of 2008 the result of pseudomonas in her throat culture sent her through 8 months of an on again off again hard hitting antibiotic called Tobramycin (TOBI), and the need to have a bronchoscopy done to see if the pseudomonas was in her lower respiratory tract – which it was. After 8 months of the 28 day on - 28 day off cycle of antibiotics Maelee received a clean throat culture in November of 2008. We were ecstatic to have that news! She remained very healthy with only a slight runny nose here and there which is why we were really taken back that in January of 2009 the pseudomonas showed up again in a routine culture. So we are back on the TOBI and being thankful that we have insurance with a tiered prescription plan this time and not having to pay $1,800 for each cycle of the medicine (we have been told that for those without any insurance those 56 golden vials of medication would cost $2,600 per cycle). So we are back to wondering what it really means for Maelee’s future to have pseudomonas and realizing that no one can tell us what it means for her individually but to just take things one cycle and culture at a time to see what it brings.
This is Maelee’s story of CF so far in her life. It is as far as we are concerned on the very low end of severity in relation to CF. We have heard lots of other patient stories that are far more severe than our Maelee’s. She is beautiful, big, strong, exceptionally smart (if I do say so myself as any mother should), and brings great joy to all around her (especially her father and I). We walk and raise money for a cure for Maelee and all the other’s we have met and heard about with Cystic Fibrosis. For the 5 year old boy who got a liver transplant resulting from the intense amount of medication he already had to intake at only 5 years old from his CF. For the 19 year old boy who got a double lung transplant from his CF. For the friend with a CF son who was on the border of having to get a feeding tube port installed in her son’s stomach so they could feed him extra nutrients at night while he slept to help him gain weight. For the mom of the daughter who at 6 years old has CF related diabetes and has more complications with her child’s eating regime than any person should. For the 27 year old elementary school teacher who was afraid to tell her co-workers about her CF and would go into the teachers lounge bathroom and give herself her IV antibiotics with the door bolted shut. For the parents who spend hours scanning every possible prescription website online trying to find the best deals on medication for their CF child. That is why we are walking.
Join team MAMA Lou as we walk at Tempe Kiwanis park this year for Cystic Fibrosis. MAMA is Maelee’s initial’s and Lou is a nick name she goes by. Last year we had shirts made for our team but this year we are doing something different. Due to my obsession with felt, and Maelee’s fascination of late with fish (and her motivation for doing her TOBI treatments being to wear her PARI Mr. Bubble’s Fish Mask, her “fishy time”) we are making fish pins for all our walkers to wear. So join our team and cause in the fight to cure Cystic Fibrosis. Our team home page is http://www.cff.org/Great_Strides/KamarahAdams6123
Maelee’s update currently is this:
*She continues to take pancreatic enzyme’s with everything she eats. The deal with CF is that the CF person’s body creates a thick mucus that coats all of their organs, although in the long run and for most this mucus most severely effects the lungs it does coat all the organs including the pancreas. A non CF person has natural enzymes released from their pancreas to help them digest their food and absorb the nutrients from it. Maelee’s pancreas being blocked with mucus does not give her the enzymes she needs to digest her food so that is why she takes them with all food she eats. Otherwise she would get any or all of the following; diarrhea, stomach ache, gas (and if not taken at all with any food she would not gain weight and be malnourished). She has always taken these enzymes like a champ. In luxurious circumstances she takes them in applesauce, on the go we pour them straight into her mouth from a capsule – either way like all things Frank and I have worried about as parents with Maelee, she is way to busy and going to care about having to take the enzymes and has always done well with them. Since last year we have heard of some adults with CF who have “grown out” of needing enzymes so that is exciting news for Maelee.
*She takes special CF vitamins in the morning. These vitamins help insure that because of her bodies inability to absorb 100% of the nutrients she eats even with enzymes that she will still have the amount she needs to keep her body healthy and strong.
*In April of 2008 Maelee had a throat culture (a swab of the deep back of her throat that gets sent to a lab and analyzed) done that came back showing a growth of pseudomonas. Pseudomonas is a bacteria that can cause cold like symptoms in anyone who gets it passed to them, but it is especially hard to get out of the thick CF mucus that is present in the lungs of those with CF. Even though Maelee had “severe cold like symptoms” for only 2 weeks back in April of 2008 the result of pseudomonas in her throat culture sent her through 8 months of an on again off again hard hitting antibiotic called Tobramycin (TOBI), and the need to have a bronchoscopy done to see if the pseudomonas was in her lower respiratory tract – which it was. After 8 months of the 28 day on - 28 day off cycle of antibiotics Maelee received a clean throat culture in November of 2008. We were ecstatic to have that news! She remained very healthy with only a slight runny nose here and there which is why we were really taken back that in January of 2009 the pseudomonas showed up again in a routine culture. So we are back on the TOBI and being thankful that we have insurance with a tiered prescription plan this time and not having to pay $1,800 for each cycle of the medicine (we have been told that for those without any insurance those 56 golden vials of medication would cost $2,600 per cycle). So we are back to wondering what it really means for Maelee’s future to have pseudomonas and realizing that no one can tell us what it means for her individually but to just take things one cycle and culture at a time to see what it brings.
This is Maelee’s story of CF so far in her life. It is as far as we are concerned on the very low end of severity in relation to CF. We have heard lots of other patient stories that are far more severe than our Maelee’s. She is beautiful, big, strong, exceptionally smart (if I do say so myself as any mother should), and brings great joy to all around her (especially her father and I). We walk and raise money for a cure for Maelee and all the other’s we have met and heard about with Cystic Fibrosis. For the 5 year old boy who got a liver transplant resulting from the intense amount of medication he already had to intake at only 5 years old from his CF. For the 19 year old boy who got a double lung transplant from his CF. For the friend with a CF son who was on the border of having to get a feeding tube port installed in her son’s stomach so they could feed him extra nutrients at night while he slept to help him gain weight. For the mom of the daughter who at 6 years old has CF related diabetes and has more complications with her child’s eating regime than any person should. For the 27 year old elementary school teacher who was afraid to tell her co-workers about her CF and would go into the teachers lounge bathroom and give herself her IV antibiotics with the door bolted shut. For the parents who spend hours scanning every possible prescription website online trying to find the best deals on medication for their CF child. That is why we are walking.
Join team MAMA Lou as we walk at Tempe Kiwanis park this year for Cystic Fibrosis. MAMA is Maelee’s initial’s and Lou is a nick name she goes by. Last year we had shirts made for our team but this year we are doing something different. Due to my obsession with felt, and Maelee’s fascination of late with fish (and her motivation for doing her TOBI treatments being to wear her PARI Mr. Bubble’s Fish Mask, her “fishy time”) we are making fish pins for all our walkers to wear. So join our team and cause in the fight to cure Cystic Fibrosis. Our team home page is http://www.cff.org/Great_Strides/KamarahAdams6123
Thanks to all,
The Adams Family
PS - Last year we had 44 beautiful (and handsome) walkers of all ages. We raised close to $1,000 and are going to try and get there again this year. Everyone has a cause, this just happens to be ours. Just the fact that we had so many turn out to support our team meant the most to us and we hope no one in anyway feels obligations of any sort.
{Maelee and Mama crossing the finish line}
{The baby crew and baby mama's who braved the day}
{Team MAMA Lou 2008, all 44 strong of us!)
2 comments:
We are so there!
You have a gift with your writing and storytelling. You did a great job I wish I could reach in my wallet and pay the $1,000.00 myself. We look forward to seeing her on her big day. Let's hope we can keep a hold on the tikes so they don't end up in the pond!
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