On April 20, our daughter, sister, teammate and friend was diagnosed with Leukemia (AML). This cancer is placing her in the hospital for 6 months while she has chemotherapy. Right now her goal is to be able to walk at her senior graduation on June 6. She is determined to beat this cancer with her family, friends and soccer team by her side. We hope this blog will be able to keep our friends and family updated and involved in her journey to 'Kick Leukemia!'
Friday, October 12, 2012
Lexe suffered a bit of a setback today. For the last couple of days Lexe felt okay but not great. This afternoon Lexe started running a fever and it spiked high enough to be told by the oncology clinic to take her to the emergency department at Primary Children's hospital. Once at the emergency room Lexe's fever spiked to 102.7 and her heart rate jumped to around 140 beats per minute. Her vital signs prompted a shock response protocol and they pumped 2 liters of fluids into her in short order. Lexe was also given an Intensive Care Unit consult to see if her condition required admission into the ICU. Blood was drawn from Lexe's central line and cultures were started to see if she has a bacterial infection in her blood. The cultures will take 24 to 48 hours to grow out. After a long stay in the ER, Lexe was admitted inpatient to the cancer unit. Hopefully tonight will be a quite night and Lexe will be able to get some rest.
Tuesday, October 9, 2012
It has been awhile since our last post, sorry. Many people have asked for an update so here we go: Lexe concluded her fourth and final round of chemo 12 days ago and rang the completion bell! Her physicians made the decision to send Lexe home with 0 immunities. She has now been home for 12 days and we have all enjoyed our time at home together as a family. Lexe's immunities have been slow to recover. She is having her levels checked twice per week and as of yesterday her ANC is only at 200, which is not yet a safe level. Lexe was scheduled for her final bone marrow aspirate and spinal tap on Wednesday the 10th. However, due to Lexe's lack of adequate immunities, the scheduled procedures have been postponed one week. These two test are going to determine whether on not Lexe is leukemia free. We are all anxious to have the tests done and the final results in our hands.
Lexe has spent her time at home eating, sleeping, organizing her room and doing some light hiking. She has been infection free and her energy levels have been pretty good. Some days are better than others but overall she is doing great. Lexe has reconnected with many of her friends and is excited to have the final tests conducted and her central line removed. Once the line is removed, which will happen about one week after all test results come back "clean", Lexe plans on starting her journey back to soccer. Lexe's body has taken a hit and she is going to face a mountain of work.
Once we have the final test results, we will let everyone know the results. We are all very confident that Lexe has beaten leukemia.
Thank you to everyone for the prayers, well wishes and concern.
Lexe has spent her time at home eating, sleeping, organizing her room and doing some light hiking. She has been infection free and her energy levels have been pretty good. Some days are better than others but overall she is doing great. Lexe has reconnected with many of her friends and is excited to have the final tests conducted and her central line removed. Once the line is removed, which will happen about one week after all test results come back "clean", Lexe plans on starting her journey back to soccer. Lexe's body has taken a hit and she is going to face a mountain of work.
Once we have the final test results, we will let everyone know the results. We are all very confident that Lexe has beaten leukemia.
Thank you to everyone for the prayers, well wishes and concern.
Sunday, September 23, 2012
Lexe remains in the hospital. Today marks the 28th day of her round four stay. She still has no immunities. Todays lab results showed, again, an Absolute Neutrophil Count of 0. Lexe is resting comfortably and has been able to stay infection free. She continues to receive units of both packed red blood cells and platelets. This will continue until her bone marrow "wakes up" and her body starts to produce blood cells on its own. Its hard to say how long it will take Lexe to start producing cells but we have been told that recovery from round four is usually the longest. Most patient need at least 40 days. We sure hope that Lexe is able to beat that number. Our entire family, and especially Lexe, is ready for a permanent reprieve from the hospital. Until then we are all keeping our fingers crossed that Lexe will remain infection free.
Yesterday Lexe's University of Arizona soccer team had a hugh win over nationally ranked Cal Bears. It was fun to track the game. The game was televised on Pac-12 TV and the following link contains a small segment explaining to the televised audience why Arizona's warm ups all are #13:
Arizona honors teammate with Leukemia
Once Lexe starts to show positive cell activity we will let everyone know.
Yesterday Lexe's University of Arizona soccer team had a hugh win over nationally ranked Cal Bears. It was fun to track the game. The game was televised on Pac-12 TV and the following link contains a small segment explaining to the televised audience why Arizona's warm ups all are #13:
Arizona honors teammate with Leukemia
Once Lexe starts to show positive cell activity we will let everyone know.
Thursday, September 13, 2012
Over the past few days Lexe has been fever free. The powerful combination of antibiotics she is receiving are working. Her latest blood cultures have shown no bacteria growth. Lexe has felt very sick over the last couple of days most likely the result of her current drugs. Her stomach is taking a real pounding and she is constantly nauseated. She has forgotten what it feels like to feel "good". Lexe has told us that her current medications make her feel worse than being on chemo. Unfortunately she will need to continue taking these antibiotics for several more days. The latest lab results show that Lexe still does not have any immunities. Its hard to say when Lexe's immunity system will rebound but it could be a week or more. This zero immunity period is frightening.
Despite the way she feels, Lexe is a real joy to be around. She is focusing on the future and is anxious to restart her life. Lexe is the most positive person we know. The finishing line is in sight!!
The following link is a story about Lexe told through the eyes of one of her Utah Avalanche teammates who is currently playing soccer at the University of Southern Utah:
http://www.suunews.com/news/2012/sep/13/madison-wood-suu-player-mission/
Despite the way she feels, Lexe is a real joy to be around. She is focusing on the future and is anxious to restart her life. Lexe is the most positive person we know. The finishing line is in sight!!
The following link is a story about Lexe told through the eyes of one of her Utah Avalanche teammates who is currently playing soccer at the University of Southern Utah:
http://www.suunews.com/news/2012/sep/13/madison-wood-suu-player-mission/
Monday, September 10, 2012
Sorry to report that Lexe had another setback. Lexe finished her fourth and final round of chemo 8 days ago. Chemo went pretty good with steroids helping to keep her fevering down. The biggest concern over the last week was the amount of weight Lexe has lost between rounds 3 and 4. Her providers were working on a strategy to help her regain some of her lost weight.
Early Sunday morning Lexe awoke to a rather large fever, 103 to 104 degrees, and had her blood cultured for bacteria. We found out last night that Lexe cultured positive for a gram stain negative bacteria. She is again septic. This sepsis is a result of her having no immunities. She has started to fever really hard and is very nauseated. Her blood pressures have had periods of being very low. She required an IV bolus this morning to help get her blood pressures up. So far she has avoided a return trip to the Intensive Care Unit. Lexe continues to receive units of both platelets and blood. She has required demerol to help control the rigors, a condition of sever shivering brought about by fevering. Lexe is currently on four different antibiotics, Vancomycin, Fortaz, Flagyl, and Gentamicin. These antibiotics are very powerful and hopefully will kill the bacteria causing all the issues. Further blood culturing, results we are waiting for, will help further nail down the best drugs to use against this bacteria. Lexe is also c difficile positive. C difficile is a bacteria that we all have in our digestive tracts. Constant antibiotic use, and chemotherapy, can cause c diff to overtake all the good bacteria in our digestive tracts causing major problems. This is being treated with the drug Flagyl.
We are very hopeful that her lungs will be spared any trauma from this episode of sepsis. We expect Lexe to start producing some of her own immunities in the next 10-14 days. Till then, join us in crossing our fingers!
Early Sunday morning Lexe awoke to a rather large fever, 103 to 104 degrees, and had her blood cultured for bacteria. We found out last night that Lexe cultured positive for a gram stain negative bacteria. She is again septic. This sepsis is a result of her having no immunities. She has started to fever really hard and is very nauseated. Her blood pressures have had periods of being very low. She required an IV bolus this morning to help get her blood pressures up. So far she has avoided a return trip to the Intensive Care Unit. Lexe continues to receive units of both platelets and blood. She has required demerol to help control the rigors, a condition of sever shivering brought about by fevering. Lexe is currently on four different antibiotics, Vancomycin, Fortaz, Flagyl, and Gentamicin. These antibiotics are very powerful and hopefully will kill the bacteria causing all the issues. Further blood culturing, results we are waiting for, will help further nail down the best drugs to use against this bacteria. Lexe is also c difficile positive. C difficile is a bacteria that we all have in our digestive tracts. Constant antibiotic use, and chemotherapy, can cause c diff to overtake all the good bacteria in our digestive tracts causing major problems. This is being treated with the drug Flagyl.
We are very hopeful that her lungs will be spared any trauma from this episode of sepsis. We expect Lexe to start producing some of her own immunities in the next 10-14 days. Till then, join us in crossing our fingers!
Monday, September 3, 2012
For all of those who have joined Team Lexe Kicks, if you haven't emailed Hadlee your tee-shirt size, PLEASE DO IT BY THE END OF THE DAY!! This is the only way to guarantee getting the right size!! We also need to order the tee-shirts!! Please email you size to teamlexekicks@gmail.com ASAP!!!! Thank you so much!!
Sunday, September 2, 2012
We are very happy to report that Lexe received her last dose of chemotherapy this morning at 3:00 AM!!!! Lexe's fourth and final round of chemo is complete. The week went pretty good with only a few bumps. During chemo Lexe was put on steroids every six hours to help keep her Ara-c induced fevers down. This lead to fluid retention and an ongoing battle with high blood pressure. Now that chemo is over, Lexe has been taken off of the steroids but her blood pressure continues to be elevated. We hope that her blood pressure will start to trend down soon.
We now enter the very scary zero immunity zone. The next 2-3 weeks Lexe will be very vulnerable to infections. It was at this point last round that Lexe went septic and ended up in the Intensive Care Unit. Needless to say we have restricted all access to Lexe in an attempt to keep her safe. Once Lexe's counts recover she will come home hopefully having beat leukemia ready to continue on with her life.
On a very positive note, the bone marrow studies done prior to the start of round 4 showed no evidence of leukemia blasts. We are very optimistic!! We are so grateful to all of the many wonderful people who have stood with us during this trying time. It is impossible to comprehend having taken this unexpected journey without all of you standing should-to-should with us. Your support has enabled us to endure this trial.
On Saturday the Tucson Star ran a story on Lexe and her U of A team. The story was on the front page of the newspaper. The attached link will take you to the story:
To our Family, Friends and Lexe Supporters,
On September 29th, CureSearch will be having its annual walk in Salt Lake City. The walk will be held at Sugar House Park (1300East 2100 South). CureSearch is a organization that raises money and awareness strictly for childhood cancer (most cancer organization only give 4% to childhood cancer). The walk consists of individual teams. Each of these teams are made in honor of a child who is fighting or has fought cancer. Each team raises money, all of which goes towards finding a cure for all types of childhood cancer.
We have made a team in honor of Lexe called "Team Lexe Kicks". We would love to have as many team members as we can! To register for "Team Lexe Kicks", you can go to our team page which is www.curesearchwalk.org/saltlake/teamlexekicks.
To register, click on the 'register' button. Then click on the picture of Utah. It will take you to the link for the Utah race. Click on that link and agree to the waiver. It will then take you to a page where you select what type of team. Click on Join a team. After that type in the name 'Team Lexe Kicks' and select our team. You will then be directed to our team page. At the top of the page, right under the title, is a 'join our team' button. Click on that and then fill out your information and donation amount. (It is a $10 registration fee for anyone over the age of 15). Click submit and you are done! Those who register before September 2nd will receive a Lexe t-shirt to wear at the walk. Also, even if you don't participate in the actual walk, you can still donate money to our team.
To get more information on CureSearch, what it does and the walk, go towww.curesearchwalk.org. If you have any questions regarding Team Lexe Kicks, please email Hadlee at teamlexekicks@gmail.com. Also, after you have registered, email us your name(s) and t-shirt size(s). Thank you for all of your love and support! We hope you can join us in this event to "Kick Cancer!"
We now enter the very scary zero immunity zone. The next 2-3 weeks Lexe will be very vulnerable to infections. It was at this point last round that Lexe went septic and ended up in the Intensive Care Unit. Needless to say we have restricted all access to Lexe in an attempt to keep her safe. Once Lexe's counts recover she will come home hopefully having beat leukemia ready to continue on with her life.
On a very positive note, the bone marrow studies done prior to the start of round 4 showed no evidence of leukemia blasts. We are very optimistic!! We are so grateful to all of the many wonderful people who have stood with us during this trying time. It is impossible to comprehend having taken this unexpected journey without all of you standing should-to-should with us. Your support has enabled us to endure this trial.
On Saturday the Tucson Star ran a story on Lexe and her U of A team. The story was on the front page of the newspaper. The attached link will take you to the story:
Just a reminder that September is childhood cancer awareness month. Since our experience with leukemia, we have all become very aware of the many children fighting this terrible disease. Lexe has formed a team to help raise both awareness and funds for childhood cancer research. The following information was part of an earlier post. If possible please join us on September 29th. We are hopeful that Lexe will be able to attend:http://azstarnet.com/sports/soccer/college/wildcats/wildcats-helping-as-lexe
-kicks-leukemia/article_483d245e-1531-5c5c-aae8-58a3960b130b.html
To our Family, Friends and Lexe Supporters,
On September 29th, CureSearch will be having its annual walk in Salt Lake City. The walk will be held at Sugar House Park (1300East 2100 South). CureSearch is a organization that raises money and awareness strictly for childhood cancer (most cancer organization only give 4% to childhood cancer). The walk consists of individual teams. Each of these teams are made in honor of a child who is fighting or has fought cancer. Each team raises money, all of which goes towards finding a cure for all types of childhood cancer.
We have made a team in honor of Lexe called "Team Lexe Kicks". We would love to have as many team members as we can! To register for "Team Lexe Kicks", you can go to our team page which is www.curesearchwalk.org/saltlake/teamlexekicks.
To register, click on the 'register' button. Then click on the picture of Utah. It will take you to the link for the Utah race. Click on that link and agree to the waiver. It will then take you to a page where you select what type of team. Click on Join a team. After that type in the name 'Team Lexe Kicks' and select our team. You will then be directed to our team page. At the top of the page, right under the title, is a 'join our team' button. Click on that and then fill out your information and donation amount. (It is a $10 registration fee for anyone over the age of 15). Click submit and you are done! Those who register before September 2nd will receive a Lexe t-shirt to wear at the walk. Also, even if you don't participate in the actual walk, you can still donate money to our team.
Monday, August 27, 2012
After only one week at home following a difficult round of chemotherapy, compounded by a life threatening stay in the Intensive Care Unit, Lexe reported to the hospital to begin her 4th and final round of chemo. The day started with a visit to the Cardiology Department for an echocardiogram and an EKG. Lexe then had clinic with her Oncologist who drew labs and examined her. Clinic was followed by a spinal tap and bone marrow aspirate in the outpatient surgical suite. Following the surgical procedures, Lexe walked herself up to the Cancer Unit to begin chemotherapy. She did not want to be pushed in a wheelchair.
This round of chemo will last six days. Chemo will be administered twice per day. Lexe will be given both Ara-C and Mitoxantrone. Mitroxantrone will be given for the first time and is a pretty nasty drug. The drug is actually blue in color and hard on the heart. The fourth and final round is called Intensification II.
During clinic Lexe was told that her heart has been slightly effected by a combination of chemotherapy and the shock of her Intensive Care experience. The echocardiogram she received today was compared to her first echocardiogram given prior to any treatment. Lexe's heart is not squeezing as hard today as it was prior to treatment. Her physician is hopeful that this condition will correct itself once treatment is concluded and Lexe is fully recovered. As added protection for her heart, prior to Lexe receiving her dose of Mitroxane, she will be given the drug Dexrazoxane which helps protect the heart against cardiotoxic agents.
Lexe has lost weight and is still a bit fragile but her physicians feel that pushing ahead with the final round gives her the best chance to beat leukemia. We are all a bit nervous about things but we have put our trust in Lexe's providers and are hoping for a smooth course of treatment. Lexe is calm and confident and is constantly telling us that everything will work out just fine. So with Lexe's confidence we forge ahead!!
This round of chemo will last six days. Chemo will be administered twice per day. Lexe will be given both Ara-C and Mitoxantrone. Mitroxantrone will be given for the first time and is a pretty nasty drug. The drug is actually blue in color and hard on the heart. The fourth and final round is called Intensification II.
During clinic Lexe was told that her heart has been slightly effected by a combination of chemotherapy and the shock of her Intensive Care experience. The echocardiogram she received today was compared to her first echocardiogram given prior to any treatment. Lexe's heart is not squeezing as hard today as it was prior to treatment. Her physician is hopeful that this condition will correct itself once treatment is concluded and Lexe is fully recovered. As added protection for her heart, prior to Lexe receiving her dose of Mitroxane, she will be given the drug Dexrazoxane which helps protect the heart against cardiotoxic agents.
Lexe has lost weight and is still a bit fragile but her physicians feel that pushing ahead with the final round gives her the best chance to beat leukemia. We are all a bit nervous about things but we have put our trust in Lexe's providers and are hoping for a smooth course of treatment. Lexe is calm and confident and is constantly telling us that everything will work out just fine. So with Lexe's confidence we forge ahead!!
Tuesday, August 21, 2012
After 17 long challenging days, Lexe was released from the Intensive Care Unit last Sunday. We are grateful for the wonderfully skilled providers who attended to Lexe during her stay. Lexe has little recollection of her stay in the ICU which is a good thing. Lexe was transferred back to the regular cancer unit where she spent Sunday night. After meeting with her Oncologists on Monday, Lexe was sent home. It is amazing that she does not need oxygen given the shape her lungs are in. Lexe is doing her part to fight through this setback. She is weak and somewhat frail but we are so glad she is home. Everything Lexe does takes a lot of effort including walking, stairs, eating etc.
It has been decided that Lexe will start her 4th and final round of chemo next Monday. She will have another bone marrow aspirate and spinal tap followed by the start of a six day chemo cycle. We are all very nervous given the events of the last several weeks. We are trying really hard to get Lexe to eat and have till Monday to get some of her weight back. Lexe will be followed by the Pulmonary team over the remainder of her treatment. They want to baseline her pulmonary abilities once she is strong enough to take the Pulmonary Function Test. Lexe will need to perform regular lung exercises for the foreseeable future. In order to minimize complications during round four, we have decided, in conjunction with Lexe's physicians, to limit Lexe's exposure to visitors. This was a difficult yet necessary decision. We encourage all of Lexe's support group to continue to stay in touch with Lexe via texting, Facebook, Skype, phone calls, emails, or blog messaging. This ordeal will soon be over and at some point normalcy will return! Please keep your relationship with Lexe active!
Lisa Oyen, U of A soccer coach, forwarded to us a great picture last week. The team is wearing a special warm up top this year in honor of Lexe. Every warm up jersey will be number 13, Lexe's number. The girls have all reached out to Lexe via texts, Facebook or letters. Even though we have never had the privilege of meeting many of these young ladies, they hold a special place in our hearts. Thank you girls!! The attached link tells the story:
http://www.arizonawildcats.com/sports/w-soccer/spec-rel/081712aad.html
Lexe's friend Ellee Duke the performer who wrote "I Came To Win --Lexe's Song", has now hosted the song on iTunes. Ellee will soon release her first album which I believe includes "I Came To Win". All proceeds from purchasing the single off of iTunes will go to Lexe. We feel, as does Ellee and her family, that the song was heavenly inspired. Ellee wrote the song April 22nd just days after Lexe's diagnosis. Little did we know then just how true the lyrics of her song would come to be. Thank you again Ellee for such a beautiful inspired song. Please support both Ellee and Lexe and download this great song. The song will compliment any playlist. The attached youtube link is Ellee introducing her song:
http://www.youtube.com/watch?v=X7jo9o9xoss&feature=plcp
Wish Lexe luck as she begins her fight with the FINAL ROUND!!
| Lexe's third round welcome home sign |
It has been decided that Lexe will start her 4th and final round of chemo next Monday. She will have another bone marrow aspirate and spinal tap followed by the start of a six day chemo cycle. We are all very nervous given the events of the last several weeks. We are trying really hard to get Lexe to eat and have till Monday to get some of her weight back. Lexe will be followed by the Pulmonary team over the remainder of her treatment. They want to baseline her pulmonary abilities once she is strong enough to take the Pulmonary Function Test. Lexe will need to perform regular lung exercises for the foreseeable future. In order to minimize complications during round four, we have decided, in conjunction with Lexe's physicians, to limit Lexe's exposure to visitors. This was a difficult yet necessary decision. We encourage all of Lexe's support group to continue to stay in touch with Lexe via texting, Facebook, Skype, phone calls, emails, or blog messaging. This ordeal will soon be over and at some point normalcy will return! Please keep your relationship with Lexe active!
Lisa Oyen, U of A soccer coach, forwarded to us a great picture last week. The team is wearing a special warm up top this year in honor of Lexe. Every warm up jersey will be number 13, Lexe's number. The girls have all reached out to Lexe via texts, Facebook or letters. Even though we have never had the privilege of meeting many of these young ladies, they hold a special place in our hearts. Thank you girls!! The attached link tells the story:
http://www.arizonawildcats.com/sports/w-soccer/spec-rel/081712aad.html
| Lexe's future U of A teammates honoring her by wearing number 13 on their warmups. |
Lexe's friend Ellee Duke the performer who wrote "I Came To Win --Lexe's Song", has now hosted the song on iTunes. Ellee will soon release her first album which I believe includes "I Came To Win". All proceeds from purchasing the single off of iTunes will go to Lexe. We feel, as does Ellee and her family, that the song was heavenly inspired. Ellee wrote the song April 22nd just days after Lexe's diagnosis. Little did we know then just how true the lyrics of her song would come to be. Thank you again Ellee for such a beautiful inspired song. Please support both Ellee and Lexe and download this great song. The song will compliment any playlist. The attached youtube link is Ellee introducing her song:
http://www.youtube.com/watch?v=X7jo9o9xoss&feature=plcp
Wish Lexe luck as she begins her fight with the FINAL ROUND!!
Friday, August 17, 2012
We are starting to see light at the end of the tunnel. Lexe is still in the Intensive Care Unit. Her lungs are still sick but today she was taken off of the vent and put on high flow oxygen. Her chest x-ray looked pretty good today, there is still room for improvement. Lexe was so happy to have the vent tube taken out. She can now smile and finally drink. Her throat is very sore and her voice is weak but that should resolve over the next couple of days. The plan is to keep Lexe in the ICU for the next several days. She has been cleared to start eating soft foods but she has no appetite. They placed an NJ Tube in her about 10 days ago so she has received some calories. Lexe will soon be moved back to the cancer unit to continue her recovery. She lost weight and muscle mass over the past two weeks so she needs to take on as many calories as possible. Lexe's physicians have told us that recovery from ARDS can take months.
One of the physician in the ICU told us today that immunocompromised patients that develop septicemia from Streptococcus Midas have a mortality rate of 60%. Add to that Acute Respiratory Distress Syndrome, which has a 40% mortality rate, and it is easy to conclude that Lexe beat some tough odds. The reality of how sick Lexe got is very sobering.
The past 15 days have been a very trying experience for our family and certainly for Lexe. We have felt the prayers and support from everyone. Lexe has had well over 110,000 hits on her blog from all over the world. Concentrated hits have come from the United States, Canada, UK, Finland, Russia, Sweden, Australia, Austria, Netherlands, Brazil, Ukraine, Belgium and the list goes on. We are touched that so many people have taken an interest in Lexe.
One of the physician in the ICU told us today that immunocompromised patients that develop septicemia from Streptococcus Midas have a mortality rate of 60%. Add to that Acute Respiratory Distress Syndrome, which has a 40% mortality rate, and it is easy to conclude that Lexe beat some tough odds. The reality of how sick Lexe got is very sobering.
The past 15 days have been a very trying experience for our family and certainly for Lexe. We have felt the prayers and support from everyone. Lexe has had well over 110,000 hits on her blog from all over the world. Concentrated hits have come from the United States, Canada, UK, Finland, Russia, Sweden, Australia, Austria, Netherlands, Brazil, Ukraine, Belgium and the list goes on. We are touched that so many people have taken an interest in Lexe.
Monday, August 13, 2012
We feel we may have reached a point of stability. We think we are safe in saying that but are never really sure so this post is written with crossed fingers. Lexe's lungs are still very sick but today we were able to see more of her ribs, her diaphragm and a better view of her heart on the chest x-ray. The bottom half of both lungs are still cloudy. All of her IVs have been removed and medications are being administered through her central line. The plan is to start stepping down her pain medication to avoid withdrawal symptoms.
Now that Lexe has developed some of her own immunities she has been moved into a new room in the Intensive Care Unit. She has windows which allow her to start adjusting to day and night cycles. The room is also in a low traffic area of the ICU helping her develop a normal sleep cycle. She continues to be on the vent. The plan is to work towards having the vent taken off near the end of the week if her lungs cooperate. Lexe is very weak and it is a struggle to even raise her arms. They sat her up today for the first time and she was able to tolerate it for about 15 minutes. Lexe's body has really been taxed during the last 11 days and recovery is going to take time. We are so grateful for the wonderful staff of caregivers in the PICU, they saved her life.
Lexe still needs to complete the last round of her chemotherapy to treat her leukemia. It's hard for us to even image the thought. I guess we can worry about that after we get her out of the ICU and stronger.
Thank you again for all the prayers and well wishes that our family has received during this very trying ordeal.
Now that Lexe has developed some of her own immunities she has been moved into a new room in the Intensive Care Unit. She has windows which allow her to start adjusting to day and night cycles. The room is also in a low traffic area of the ICU helping her develop a normal sleep cycle. She continues to be on the vent. The plan is to work towards having the vent taken off near the end of the week if her lungs cooperate. Lexe is very weak and it is a struggle to even raise her arms. They sat her up today for the first time and she was able to tolerate it for about 15 minutes. Lexe's body has really been taxed during the last 11 days and recovery is going to take time. We are so grateful for the wonderful staff of caregivers in the PICU, they saved her life.
Lexe still needs to complete the last round of her chemotherapy to treat her leukemia. It's hard for us to even image the thought. I guess we can worry about that after we get her out of the ICU and stronger.
Thank you again for all the prayers and well wishes that our family has received during this very trying ordeal.
Sunday, August 12, 2012
This morning at 4:00 am Lexe started have troubles keeping her oxygen saturations levels in a normal range. Her ventilator pressures needed to be increased again in order for her to get enough oxygen. This is a setback!! Her chest x-ray this morning showed increased secretions in her lungs. Her heart is again rolling left against her lung. We will find out this morning what the game plan is for the day.
Lexe body is fevering hard and she is trying to cough. Now that she is off the paralytic medicine you can see her facial expressions and it breaks our hearts to see her pain. Every time they suction her lungs through her vent tube Lexe will squeeze your hand with great force. It seems to be a very unpleasant experience. She is disoriented yet aware of her situation. On occasion we see her tears. We write most of these posts through our own tears as well.
Lexe body is fevering hard and she is trying to cough. Now that she is off the paralytic medicine you can see her facial expressions and it breaks our hearts to see her pain. Every time they suction her lungs through her vent tube Lexe will squeeze your hand with great force. It seems to be a very unpleasant experience. She is disoriented yet aware of her situation. On occasion we see her tears. We write most of these posts through our own tears as well.
Saturday, August 11, 2012
The last nine days have been an emotional roller coaster for our family. We have come to understand that things in the Intensive Care Unit change very rapidly. Don't ever get comfortable because you never know what is coming next. With that in mind, Lexe has had a good last couple of days. We are afraid to even say that!!
Today Lexe's ANC count, a measure of her own bodies immunity, jumped from 300 to 1400. It is rare to see such a jump over a 24 hour period. It now means that Lexe can help herself in clearing out her own lungs. Several day ago Lexe was placed on an oscillating vent to help break up the material in her lungs. This type of vent sends small rapid infusions of oxygen into the lungs, shaking them, to help diffuse all the secretions. Today Lexe was transitioned back to a regular vent. She tolerated the transition and seems to be much more comfortable with the vent. Lexe was also taken off the paralytic medication but remains heavily sedated. Lexe continues to fever. She remains on the cooling blanket, however, now she is off the paralytic medication her shivering reflex is active making the blanket less effective because shivering heats the body.
It was tough for us to leave her tonight because she was in pain and very disoriented. She was trying to communicate with us but with the vent tube in her mouth it was impossible. The next step will be to try and take her off the ventilator. We don't know when that will be but we will keep everyone posted. We are all praying for this ICU experience to be over. We are so proud of Lexe. She is fighting so hard her spirit and determination are amazing.
Today Lexe's ANC count, a measure of her own bodies immunity, jumped from 300 to 1400. It is rare to see such a jump over a 24 hour period. It now means that Lexe can help herself in clearing out her own lungs. Several day ago Lexe was placed on an oscillating vent to help break up the material in her lungs. This type of vent sends small rapid infusions of oxygen into the lungs, shaking them, to help diffuse all the secretions. Today Lexe was transitioned back to a regular vent. She tolerated the transition and seems to be much more comfortable with the vent. Lexe was also taken off the paralytic medication but remains heavily sedated. Lexe continues to fever. She remains on the cooling blanket, however, now she is off the paralytic medication her shivering reflex is active making the blanket less effective because shivering heats the body.
It was tough for us to leave her tonight because she was in pain and very disoriented. She was trying to communicate with us but with the vent tube in her mouth it was impossible. The next step will be to try and take her off the ventilator. We don't know when that will be but we will keep everyone posted. We are all praying for this ICU experience to be over. We are so proud of Lexe. She is fighting so hard her spirit and determination are amazing.
Thursday, August 9, 2012
Yesterday started out with such promise. We were all expecting a great day but unfortunately Lexe suffered a setback around 1:00 pm. Lexe's left lung collapsed causing her oxygen saturation rates to drop to life threatening levels. It was a very tense situation as the team of providers in the ICU worked hard to stabilize Lexe. It was very hard to watch.
The decision was made to perform a bronchoscopy. The pulmonary team inserted a camera and cannula into her lungs to deep suction her lung fields. She has very thick secretions in both lungs making suctioning difficult. The physician removed as much of the secretions as possible. Lexe tolerated the procedure well. Later in the day her left lung re-inflated. Both lungs still contain secretions affecting Lexe's respiratory output. She remains ventilated and sedated. However we hope her oxygen saturation level will improve.
Today the pulmonary team performed another bronchoscopy and removed more of the secretions. At present Lexe remains critically ill. We are very hopeful that Lexe can have a quiet evening. Her heart continues to beat strong and hard, and her fluid output is improving. At some point, most likely today, Lexe's paralytic medication will be reduced. She needs to start moving to prevent secondary problems associated with her paralytic state.
The decision was made to perform a bronchoscopy. The pulmonary team inserted a camera and cannula into her lungs to deep suction her lung fields. She has very thick secretions in both lungs making suctioning difficult. The physician removed as much of the secretions as possible. Lexe tolerated the procedure well. Later in the day her left lung re-inflated. Both lungs still contain secretions affecting Lexe's respiratory output. She remains ventilated and sedated. However we hope her oxygen saturation level will improve.
Today the pulmonary team performed another bronchoscopy and removed more of the secretions. At present Lexe remains critically ill. We are very hopeful that Lexe can have a quiet evening. Her heart continues to beat strong and hard, and her fluid output is improving. At some point, most likely today, Lexe's paralytic medication will be reduced. She needs to start moving to prevent secondary problems associated with her paralytic state.
Tuesday, August 7, 2012
Today has been a day of Lexe holding her own. She is putting up a big fight!! The medical team in the Intensive Care Unit have been able to stabilize Lexe's blood pressure for now. She continues to be reliant on Norepinephrine to help her keep a viable blood pressure. Today's chest x-ray showed her lungs to be worse than yesterday. Lexe continues to bleed from her lungs. To minimize coughing and the chance of further lung irritation, Lexe has been put on a full time IV paralyzing her. Lexe continues to fever at a high rate and is on a cooling blanket most of the time. Being paralyzed helps Lexe not shiver as she cools. Lexe has stopped responding to the drug they were giving her to reduce her fever. When cooled down Lexe's heart rate drops which is a really good thing. Lexe's heart continues to beat at a very high rate.
One big issue facing Lexe right now is fluid overload. Her volume of fluid intake is outpacing her output. This is causing fluid issues with the lungs and heart. At present they are working on keeping her blood pressure up and giving her medication to help her process fluids. It is a tough balancing act involving many different drug combinations. At present Lexe has 10 different IV pumps working to deliver a wide spectrum of drug and blood products.
We are very hopeful that Lexe's kidneys will continue to be efficient. They have been stressed over the last several days.
We are praying for an uneventful night!!
Thank you for all the help you have given our family during this very stressful time. We are especially grateful for the kind words and prayers that have been sent our way. We are blessed to have so many people concerned for our family.
One big issue facing Lexe right now is fluid overload. Her volume of fluid intake is outpacing her output. This is causing fluid issues with the lungs and heart. At present they are working on keeping her blood pressure up and giving her medication to help her process fluids. It is a tough balancing act involving many different drug combinations. At present Lexe has 10 different IV pumps working to deliver a wide spectrum of drug and blood products.
We are very hopeful that Lexe's kidneys will continue to be efficient. They have been stressed over the last several days.
We are praying for an uneventful night!!
Thank you for all the help you have given our family during this very stressful time. We are especially grateful for the kind words and prayers that have been sent our way. We are blessed to have so many people concerned for our family.
Monday, August 6, 2012
We are very sad to report that Lexe situation has continued to deteriorate. This morning she was unable to breath on her own and was sedated and put on a breathing tube. All of her breathing is now being done by a machine. Lexe has been chemically paralyzed and put on a cooling pad to reduce her core temperature. It appears that the bacteria is now having a negative effect on her lungs. Lexe's heart functions are also not so great right now with a resting heart beat of around 115-125 beats per minute. Her heart is working really hard right now and is enlarged with some fluid in her heart sack. We have been told that Lexe is in critical/stable condition. The nursing and physician staff in the ICU are great and are giving Lexe the best care in the world.
We as a family are very worried and are praying for her to catch a break! It seems that the Intensive Care Unit will be our home for some time. Please pray for Lexe we all need her in our lives for many years to come.
We as a family are very worried and are praying for her to catch a break! It seems that the Intensive Care Unit will be our home for some time. Please pray for Lexe we all need her in our lives for many years to come.
Sunday, August 5, 2012
Since the conclusion of Lexe's third round of chemo she had been doing very well up until Thursday night. Her blood pressure dropped to dangerously low levels and was accompanied by extremely high fevers, ranging from 103-107 degrees. Because of the low blood pressure, she was taken down to the Pediatric Intensive Care Unit. A blood culture confirmed that she had a bacterial infection in her blood and she was immediately put on antibiotics. The antibiotics are working and she is no longer septic, but has developed further complications including Acute Respiratory Distress Syndrome (ARDS). ARDS compromises the ability to breathe and it became very difficult for her to breathe last night. The decision was made this morning to put her on a BIPAP machine. The BIPAP forced air into lungs so that she can properly oxygenate. Lexe is expected to be in the PICU for several more days, during which they will try to get her breathing on her own. At this time we have to limit Lexe's visitors to immediate family only. We are grateful for the fasting and prayers on our behalf. We love you all.
Thursday, July 26, 2012
To our Family, Friends and Lexe Supporters,
On September 29th, CureSearch will be having its annual walk in Salt Lake City. The walk will be held at Sugar House Park (1300East 2100 South). CureSearch is a organization that raises money and awareness strictly for childhood cancer (most cancer organization only give 4% to childhood cancer). The walk consists of individual teams. Each of these teams are made in honor of a child who is fighting or has fought cancer. Each team raises money, all of which goes towards finding a cure for all types of childhood cancer.
We have made a team in honor of Lexe called "Team Lexe Kicks". We would love to have as many team members as we can! To register for "Team Lexe Kicks", you can go to our team page which is www.curesearchwalk.org/saltlake/teamlexekicks.
To register, click on the 'register' button. Then click on the picture of Utah. It will take you to the link for the Utah race. Click on that link and agree to the waiver. It will then take you to a page where you select what type of team. Click on Join a team. After that type in the name 'Team Lexe Kicks' and select our team. You will then be directed to our team page. At the top of the page, right under the title, is a 'join our team' button. Click on that and then fill out your information and donation amount. (It is a $10 registration fee for anyone over the age of 15). Click submit and you are done! Those who register before September 2nd will receive a Lexe t-shirt to wear at the walk. Also, even if you don't participate in the actual walk, you can still donate money to our team.
To get more information on CureSearch, what it does and the walk, go to www.curesearchwalk.org. If you have any questions regarding Team Lexe Kicks, please email Hadlee at teamlexekicks@gmail.com. Also, after you have registered, email us your name(s) and t-shirt size(s). Thank you for all of your love and support! We hope you can join us in this event to "Kick Cancer!"
On September 29th, CureSearch will be having its annual walk in Salt Lake City. The walk will be held at Sugar House Park (1300East 2100 South). CureSearch is a organization that raises money and awareness strictly for childhood cancer (most cancer organization only give 4% to childhood cancer). The walk consists of individual teams. Each of these teams are made in honor of a child who is fighting or has fought cancer. Each team raises money, all of which goes towards finding a cure for all types of childhood cancer.
We have made a team in honor of Lexe called "Team Lexe Kicks". We would love to have as many team members as we can! To register for "Team Lexe Kicks", you can go to our team page which is www.curesearchwalk.org/saltlake/teamlexekicks.
To register, click on the 'register' button. Then click on the picture of Utah. It will take you to the link for the Utah race. Click on that link and agree to the waiver. It will then take you to a page where you select what type of team. Click on Join a team. After that type in the name 'Team Lexe Kicks' and select our team. You will then be directed to our team page. At the top of the page, right under the title, is a 'join our team' button. Click on that and then fill out your information and donation amount. (It is a $10 registration fee for anyone over the age of 15). Click submit and you are done! Those who register before September 2nd will receive a Lexe t-shirt to wear at the walk. Also, even if you don't participate in the actual walk, you can still donate money to our team.
Sunday, July 22, 2012
Lexe started her third round of chemotherapy last friday evening. She will be dosed in the morning and evening thru this coming Wednesday. As mentioned earlier, her chemo will be a total of five days. The duration is shorter than previous rounds but the dosage she is receiving is much higher. Things are going okay. Lexe has developed a sore throat, most likely a result of the chemo. Chemotherapy destroys the fast growing cells in the body which include the lining in the mouth and throat. As expected during chemo, Lexe has no appetite.
As a preventative measure against chemo induced fevers, Lexe has been put on a steroid that she gets prior to every chemo dose. Unfortunately the steroids are leaving Lexe looking kinda puffy right now. A small price to pay to keep the fevers away.
Last Tuesday Danielle Sunderhaus, one of the coaches at the University of Arizona, came to visit Lexe at our home. We have now had all three of Lexe's coaches out to our home. We had a great visit went to lunch and then drove up to Snowbird Ski Resort to take a tram ride. It was fun! We are really looking forward to following the U of A soccer team and know that they are in for a good season.
Jenn Heslop once again decorated Lexe's hospital room. The room theme for round three is "Laughter Is The Best Medicine". Lexe's room is covered in jokes from family and friends. Thanks Jenn and Carli!!
Come Wednesday the last of the chemo for round three will be done!!!!
As a preventative measure against chemo induced fevers, Lexe has been put on a steroid that she gets prior to every chemo dose. Unfortunately the steroids are leaving Lexe looking kinda puffy right now. A small price to pay to keep the fevers away.
Last Tuesday Danielle Sunderhaus, one of the coaches at the University of Arizona, came to visit Lexe at our home. We have now had all three of Lexe's coaches out to our home. We had a great visit went to lunch and then drove up to Snowbird Ski Resort to take a tram ride. It was fun! We are really looking forward to following the U of A soccer team and know that they are in for a good season.
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| Lexe and Danielle at the top of Snowbird |
| Round three room theme |
| Jokes like this one are all over the walls |
| Each strip of the banners contain a joke that visitors pull and share |
Monday, July 16, 2012
Lexe has really enjoyed her time at home. Everything feels so normal. However, all good things must come to an end. This coming Wednesday Lexe is scheduled for both a bone marrow aspirate and a spinal tap. This will be outpatient surgery and Lexe will return home after the two procedures. She will be readmitted to the hospital on Friday morning for the start of chemo...round three. Chemo will be given for only five days, unfortunately, the strength of the chemo will increase ten fold!! At this point Lexe's attitude is lets get to the hospital so we can get this over with.
During this break from the hospital Lexe has turned to golf for exercise. Lexe and Laurie have taken a lesson and spent time on the driving range. Lexe has developed a very good golf swing.
Last week lexe received a package in the mail from Amy Rodriguez, a forward on the USA Women's National Team. Amy wrote Lexe a really cool letter and included a shirt signed by the entire Women's National Team. The team played a final warm up match against Canada in Salt Lake City on June 30th
and then departed to London for the olympic games. Really awesome of Amy to take an interest in Lexe.
Overall things are going well. Lexe is positive and happy. Life is good!!
During this break from the hospital Lexe has turned to golf for exercise. Lexe and Laurie have taken a lesson and spent time on the driving range. Lexe has developed a very good golf swing.
Last week lexe received a package in the mail from Amy Rodriguez, a forward on the USA Women's National Team. Amy wrote Lexe a really cool letter and included a shirt signed by the entire Women's National Team. The team played a final warm up match against Canada in Salt Lake City on June 30th
and then departed to London for the olympic games. Really awesome of Amy to take an interest in Lexe.
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| Jersey signed by US National Team |
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