Music: Salt Lake City Rain by Ryan Tanner
Monday, June 24, 2013
Slide Show
For those of you unable to attend Hannah's memorial services, here is a slide show of the photos I took.
Hannah's Life Sketch
Hannah Belle Shaw was born in Moses Lake Washington on July 6th 1999 . She is the 11th of 12 children born to Mark and Cindy Shaw. Her brothers and sisters are: Brigham, Camilla, Levi, Dallin, Sterling, Emma, Rebekah, Hyrum, Isaac, Ammon and of course her darling little sister Holly. At the time of her birth the family home was in Othello.
Hannah’s arrival brought untold joy and happiness to the family. She was an angel child. Her disposition was calm and sweet. She was completely undemanding, so much so that her feedings had to be scheduled as she wouldn’t cry when she was hungry. She was just content and pleasant. The whole family very quickly became overwhelmed with attachment to her. Even as an infant it seemed as though her spirit filled the room. Her heavenly influence was always there.
She went to preschool at Lutagaga Elementary in Othello and had two very special teachers; Heidi Wagner and Charity Michael. Hannah loved school, and she especially loved riding the school bus. When her dad retired from the Postal Service he took a job as a bus driver, which was so exciting for Hannah. She was elated to ride his bus. On one occasion as she was sitting in the back of daddy’s bus, it bounced over a bump, from the back of the bus a little voice loudly exclaimed “nice DAD”.
Everyone that worked with Hannah couldn’t help but fall completely in love with her, which at times could be frustrating because she was quite guarded, and rarely showed open affection (a trait she no doubt inherited from her father). If you got a snuggle or a high five or a fist pump you knew you had accomplished something special.
Hannah was brutally honest in her communication with you. If she liked something she responded with open pleasure and unabashed excitement. We loved to give Hannah gifts and she LOVED to receive them! However, the giver was as, or more important, than the gift. For example, not too long before Hyrum left on the mission he and Hannah had had a little tiff you might say, a rough spot in the relationship. Well, this was at Christmastime and he had wrapped up a little train whistle for her. When she opened it she was delighted, until she found out it was from Hyrum- when he told her HE was the giver of the gift she immediately chucked it across the room. We all burst into laughter. But let’s make it known that the tiff was just a little temporary ripple in their relationship. Just days later, as Hyrum boarded the plane for the missionfield in far away Brazil, Hannah sat down on the floor of the airport terminal and wept and could hardly be consoled. She loved her brother. She loves her brothers and sisters.
Just recently and shortly before her passing while she lay in a semi sedated condition and struggling to breath, her siblings came to her bedside. When she became aware of their presence, as they came into the room and she heard their voices, she rose up in her bed to a sitting positon and we could not get her to lay down. Her neck was so weak that she could hardly hold up her head, but she was determined to engage with the family. As she struggled we all became heartsick; to allow her to “come to” would be excruciating for her physically, yet to deny her was to be excruciating for her emotionally. The nurses gave her additional pain medications and sedatives to help her to lie back, but she continued to struggle. Rebekah had made her a beautiful family album to enjoy while she layed in her bed. They brought the album on this occasion and when she saw it she reached out her hands and clutched onto it. We had to literally pry it out of her arms. How she loved her family. We were her whole world.
As a small child Hannah continued to be the centerpiece of the Shaw home. As her personality emerged we began to see her for who she was and she quickly gained absolute seniority in the family. Although her language skills were inadequate by normal standards she had the ability to communicate with absolute clarity. We found ourselves often asking “who is this child”?
Having 7 older brothers was no challenge for this little sergeant. It was clear she had led brigades in the life before. She was fearless, which was an attribute she called upon later as she faced her battle with cancer.
How we enjoyed her. And she found her joy in us.
In 2008, just after she turned nine years old, the family moved to Richland.
Late in September of 2009 Hannah became very ill, and on October 1st 2009 she was diagnosed with Acute Lymphoblastic Leukemia. She was sent to Seattle Children’s Hospital where she underwent chemotherapy. She also underwent radiation therapy at University of Washington during that time. Hannah’s treatment at the hospital lasted one year and two weeks, and then she had additional daily treatments at home for another 15 months. Throughout this time she remained the light of our lives. As we watched her unflinchingly take the assault of the harsh drugs, we were all amazed at her resilience and submissive spirit. Bearing in mind that she didn’t fully comprehend just why she was so sick, she just continued on to endure almost routinely the onslaught of drugs. She never once complained. We felt that her limited capacity to understand the severity of her disease was a blessing to her. She loved the kindness and attention she got from the loving staff at the Hospital. The Dr.s and nurses adored her, and at her passing there was a barrage of hospital professionals who filled the room in tears. Each expressing how “special” Hannah was and how she had blessed their lives.
She passed away from us and into the presence of loved ones beyond the veil at 10:00 am on June 11, 2013.
How she will be missed. Our home is quiet and the silence is deafening. The sounds of her activity and enchanting personality have been replaced with quiet thoughts and contemplations as we sit and remember and consider the joy we will have when we surely will meet her again.
Hannah’s arrival brought untold joy and happiness to the family. She was an angel child. Her disposition was calm and sweet. She was completely undemanding, so much so that her feedings had to be scheduled as she wouldn’t cry when she was hungry. She was just content and pleasant. The whole family very quickly became overwhelmed with attachment to her. Even as an infant it seemed as though her spirit filled the room. Her heavenly influence was always there.
She went to preschool at Lutagaga Elementary in Othello and had two very special teachers; Heidi Wagner and Charity Michael. Hannah loved school, and she especially loved riding the school bus. When her dad retired from the Postal Service he took a job as a bus driver, which was so exciting for Hannah. She was elated to ride his bus. On one occasion as she was sitting in the back of daddy’s bus, it bounced over a bump, from the back of the bus a little voice loudly exclaimed “nice DAD”.
Everyone that worked with Hannah couldn’t help but fall completely in love with her, which at times could be frustrating because she was quite guarded, and rarely showed open affection (a trait she no doubt inherited from her father). If you got a snuggle or a high five or a fist pump you knew you had accomplished something special.
Hannah was brutally honest in her communication with you. If she liked something she responded with open pleasure and unabashed excitement. We loved to give Hannah gifts and she LOVED to receive them! However, the giver was as, or more important, than the gift. For example, not too long before Hyrum left on the mission he and Hannah had had a little tiff you might say, a rough spot in the relationship. Well, this was at Christmastime and he had wrapped up a little train whistle for her. When she opened it she was delighted, until she found out it was from Hyrum- when he told her HE was the giver of the gift she immediately chucked it across the room. We all burst into laughter. But let’s make it known that the tiff was just a little temporary ripple in their relationship. Just days later, as Hyrum boarded the plane for the missionfield in far away Brazil, Hannah sat down on the floor of the airport terminal and wept and could hardly be consoled. She loved her brother. She loves her brothers and sisters.
Just recently and shortly before her passing while she lay in a semi sedated condition and struggling to breath, her siblings came to her bedside. When she became aware of their presence, as they came into the room and she heard their voices, she rose up in her bed to a sitting positon and we could not get her to lay down. Her neck was so weak that she could hardly hold up her head, but she was determined to engage with the family. As she struggled we all became heartsick; to allow her to “come to” would be excruciating for her physically, yet to deny her was to be excruciating for her emotionally. The nurses gave her additional pain medications and sedatives to help her to lie back, but she continued to struggle. Rebekah had made her a beautiful family album to enjoy while she layed in her bed. They brought the album on this occasion and when she saw it she reached out her hands and clutched onto it. We had to literally pry it out of her arms. How she loved her family. We were her whole world.
As a small child Hannah continued to be the centerpiece of the Shaw home. As her personality emerged we began to see her for who she was and she quickly gained absolute seniority in the family. Although her language skills were inadequate by normal standards she had the ability to communicate with absolute clarity. We found ourselves often asking “who is this child”?
Having 7 older brothers was no challenge for this little sergeant. It was clear she had led brigades in the life before. She was fearless, which was an attribute she called upon later as she faced her battle with cancer.
How we enjoyed her. And she found her joy in us.
In 2008, just after she turned nine years old, the family moved to Richland.
Late in September of 2009 Hannah became very ill, and on October 1st 2009 she was diagnosed with Acute Lymphoblastic Leukemia. She was sent to Seattle Children’s Hospital where she underwent chemotherapy. She also underwent radiation therapy at University of Washington during that time. Hannah’s treatment at the hospital lasted one year and two weeks, and then she had additional daily treatments at home for another 15 months. Throughout this time she remained the light of our lives. As we watched her unflinchingly take the assault of the harsh drugs, we were all amazed at her resilience and submissive spirit. Bearing in mind that she didn’t fully comprehend just why she was so sick, she just continued on to endure almost routinely the onslaught of drugs. She never once complained. We felt that her limited capacity to understand the severity of her disease was a blessing to her. She loved the kindness and attention she got from the loving staff at the Hospital. The Dr.s and nurses adored her, and at her passing there was a barrage of hospital professionals who filled the room in tears. Each expressing how “special” Hannah was and how she had blessed their lives.
She passed away from us and into the presence of loved ones beyond the veil at 10:00 am on June 11, 2013.
How she will be missed. Our home is quiet and the silence is deafening. The sounds of her activity and enchanting personality have been replaced with quiet thoughts and contemplations as we sit and remember and consider the joy we will have when we surely will meet her again.
Tuesday, June 11, 2013
06/11/2013
From De Anna:
I talked to Cindy about an hour ago, they are on their way home. Funeral arrangements are underway and the funeral will be held at 10:00 am on Saturday at the LDS Kennewick Stake Center (895 West Gage Blvd Richland, WA). Cindy's brother is working with Mueller's Tri-Cities Funeral Home (1401 S. Union, Kennewick, WA 99338) to handle the arrangements. Please share with those who would like to know.
After spending yesterday with Hannah, last night the older children were able to go get some sleep and were back at 9 am. Hannah passed peacefully shortly thereafter. Cindy said it was as if Hannah had waited through the night for them to return.
Cindy spoke with a beautiful, peaceful spirit as she recounted Hannah's last moments, she is comforted by the knowledge that Hannah is truly (and has always been) an angel.
Donations are still being accepted here or at any US Bank.
From De Anna:
I talked to Cindy about an hour ago, they are on their way home. Funeral arrangements are underway and the funeral will be held at 10:00 am on Saturday at the LDS Kennewick Stake Center (895 West Gage Blvd Richland, WA). Cindy's brother is working with Mueller's Tri-Cities Funeral Home (1401 S. Union, Kennewick, WA 99338) to handle the arrangements. Please share with those who would like to know.
After spending yesterday with Hannah, last night the older children were able to go get some sleep and were back at 9 am. Hannah passed peacefully shortly thereafter. Cindy said it was as if Hannah had waited through the night for them to return.
Cindy spoke with a beautiful, peaceful spirit as she recounted Hannah's last moments, she is comforted by the knowledge that Hannah is truly (and has always been) an angel.
Donations are still being accepted here or at any US Bank.
06/11/2013
At 10 am this morning Hannah passed away surrounded by her family. Details will be forthcoming. Please continue to pray for the Shaw family at this time.
From Camilla's Facebook: "Our Sweet Hannah went back to live with Heavenly Father this morning. We love her and miss her terribly, and can't wait to see her again. Thank you everyone, so much, for your prayers and support"
At 10 am this morning Hannah passed away surrounded by her family. Details will be forthcoming. Please continue to pray for the Shaw family at this time.
From Camilla's Facebook: "Our Sweet Hannah went back to live with Heavenly Father this morning. We love her and miss her terribly, and can't wait to see her again. Thank you everyone, so much, for your prayers and support"
Monday, June 10, 2013
06/10/2013
Hannah's condition really declined last night. It seems clear that she won't be able to make it back to her home in Richland. The children from here are all on their way over right now. Cindy said that at this time Hannah is resting peacefully and can still be roused from her sleepy state. Please pray that the family can have some meaningful time together once the children arrive. One million prayers today, please.
Hannah's condition really declined last night. It seems clear that she won't be able to make it back to her home in Richland. The children from here are all on their way over right now. Cindy said that at this time Hannah is resting peacefully and can still be roused from her sleepy state. Please pray that the family can have some meaningful time together once the children arrive. One million prayers today, please.
Sunday, June 9, 2013
06/09/2013
Well, as for Hannah, we had a rough evening but she is so strong and determined. The day was quite uneventful, just a lot of monitor watching and pondering. At around 8 pm Mark headed for the airport to pick up Emma from her flight from Boston. Just soon after he left, Hannah became agitated with the cannula and all of the sudden she had a nosebleed. I was alone in the room and she became quite panicked when she saw "Mr. Red". I hit the call button but it was a few minutes before a nurse arrived. During that time the bleeding became quite profuse. I struggled to calm Hannah (and myself!) but was, thankfully, able to find enough composure to keep things under control by speaking comforting words and dirtying A LOT of white washcloths. (Boy am I glad I don't do the laundry for this place !). So the nurses finally got to the room--a barrage of them--and they quickly took over. With me in the bed now holding Hannah securely as she protested the nurses pinching of her nose, things became manageable. Hannah continued to be very upset at all the blood and the hectic scene-and she wasn't afraid to let us know just what she thought, in her mind, was the cause of the bleeding (the "dumb/idiot tubey") She kept raising her skinny little fist and exclaiming "idiot tubey" all the time we kept pinching and wiping and calming. It went on for a good 20 to 30 minutes I suppose, till finally the bleeding stopped and we got the masks cleaned up and back into place.
Looking back I can imagine that Hannah was quite dizzy and disoriented through all the screaming and shaking of fists, as her sats dropped down into the 70% range often and didn't rise above 80 for several minutes at a time. After all of the help left and we were there again in the bed alone it took some time for her oxygen levels to return to the mid 90% and while I just held her there, waiting for her dad to come back, I realized that we had both done a very good job in a very bad situation and I was glad. I know we have hard times ahead of a similar nature. I realize the presence of the spirit when it is needed. It seems to just quietly descend and then rest on you til the crisis is over and then you are made aware of the power outside of yourself that has enabled you to endure. I was quietly reminded (again) that Heavenly Father is ever aware and ever present. That the anxiety of the unknown is often more difficult than the unknown when it manifests itself. That I am never, never alone. That He loves me. That He weeps, and worries and also rejoices with me when the storm passes. It is powerful to know this. I rely on this knowledge from moment to moment.
So now Hannah is again sleeping, breathing is becoming more labored but she is holding her saturation levels high. One bright ray in the midst of the turmoil was that she was able to get rid of alot of junk from her lungs as she coughed and sputtered about. Her little self just puked and puffed and cleared herself right out. So the rattle in her chest is a little quieter for now. Being thankful for that.
Well, I need to get back to the room. Again, thank you for all that you are doing my friend.
Cindy
Well, as for Hannah, we had a rough evening but she is so strong and determined. The day was quite uneventful, just a lot of monitor watching and pondering. At around 8 pm Mark headed for the airport to pick up Emma from her flight from Boston. Just soon after he left, Hannah became agitated with the cannula and all of the sudden she had a nosebleed. I was alone in the room and she became quite panicked when she saw "Mr. Red". I hit the call button but it was a few minutes before a nurse arrived. During that time the bleeding became quite profuse. I struggled to calm Hannah (and myself!) but was, thankfully, able to find enough composure to keep things under control by speaking comforting words and dirtying A LOT of white washcloths. (Boy am I glad I don't do the laundry for this place !). So the nurses finally got to the room--a barrage of them--and they quickly took over. With me in the bed now holding Hannah securely as she protested the nurses pinching of her nose, things became manageable. Hannah continued to be very upset at all the blood and the hectic scene-and she wasn't afraid to let us know just what she thought, in her mind, was the cause of the bleeding (the "dumb/idiot tubey") She kept raising her skinny little fist and exclaiming "idiot tubey" all the time we kept pinching and wiping and calming. It went on for a good 20 to 30 minutes I suppose, till finally the bleeding stopped and we got the masks cleaned up and back into place.
Looking back I can imagine that Hannah was quite dizzy and disoriented through all the screaming and shaking of fists, as her sats dropped down into the 70% range often and didn't rise above 80 for several minutes at a time. After all of the help left and we were there again in the bed alone it took some time for her oxygen levels to return to the mid 90% and while I just held her there, waiting for her dad to come back, I realized that we had both done a very good job in a very bad situation and I was glad. I know we have hard times ahead of a similar nature. I realize the presence of the spirit when it is needed. It seems to just quietly descend and then rest on you til the crisis is over and then you are made aware of the power outside of yourself that has enabled you to endure. I was quietly reminded (again) that Heavenly Father is ever aware and ever present. That the anxiety of the unknown is often more difficult than the unknown when it manifests itself. That I am never, never alone. That He loves me. That He weeps, and worries and also rejoices with me when the storm passes. It is powerful to know this. I rely on this knowledge from moment to moment.
So now Hannah is again sleeping, breathing is becoming more labored but she is holding her saturation levels high. One bright ray in the midst of the turmoil was that she was able to get rid of alot of junk from her lungs as she coughed and sputtered about. Her little self just puked and puffed and cleared herself right out. So the rattle in her chest is a little quieter for now. Being thankful for that.
Well, I need to get back to the room. Again, thank you for all that you are doing my friend.
Cindy
Saturday, June 8, 2013
06/08/2013
From De Anna:
I spoke with Cindy around noon. Hannah seems a bit stronger today – more alert – and for that they are grateful! They are still at Seattle Children’s hospital. Maybe it’s for the best; Mark got stuck in Friday night traffic and arrived later than expected, Hannah was worn out from the trip to Seattle in the wee hours Friday morning and a trip back that night would have taken its toll, and the Transfer Coordinator there at Children’s will not be back till Monday morning to process Hannah out. So for now they are waiting.
Hannah has been moved from IV antibiotics to oral, from oxygen mask to cannula (which she HATES) and things there in her room have slowed down to a snail’s pace as nurses and staff are no longer rushing in and out, but awaiting her departure. One of Hannah’s big sisters is flying into Seattle tonight. They have a very special bond and Hannah is so excited to see her. Cindy says that when Hannah sees someone she loves it’s like all the excitement and surprise of opening a present – wonderful for a good five minutes! That’s all she needs to brighten her day.
Cindy says that, although she recognizes they have exhausted the available medical options, she is still full of hope. She recited just a few of the miracles our Savior performed while here on earth, and testified that she knows miracles still occur every day. Cindy’s will is aligned with our Heavenly Father’s and her heart is open and hopeful about what is to come.
Again, she does check the messages here, all you have to do is click on the “comments” tab.
From De Anna:
I spoke with Cindy around noon. Hannah seems a bit stronger today – more alert – and for that they are grateful! They are still at Seattle Children’s hospital. Maybe it’s for the best; Mark got stuck in Friday night traffic and arrived later than expected, Hannah was worn out from the trip to Seattle in the wee hours Friday morning and a trip back that night would have taken its toll, and the Transfer Coordinator there at Children’s will not be back till Monday morning to process Hannah out. So for now they are waiting.
Hannah has been moved from IV antibiotics to oral, from oxygen mask to cannula (which she HATES) and things there in her room have slowed down to a snail’s pace as nurses and staff are no longer rushing in and out, but awaiting her departure. One of Hannah’s big sisters is flying into Seattle tonight. They have a very special bond and Hannah is so excited to see her. Cindy says that when Hannah sees someone she loves it’s like all the excitement and surprise of opening a present – wonderful for a good five minutes! That’s all she needs to brighten her day.
Cindy says that, although she recognizes they have exhausted the available medical options, she is still full of hope. She recited just a few of the miracles our Savior performed while here on earth, and testified that she knows miracles still occur every day. Cindy’s will is aligned with our Heavenly Father’s and her heart is open and hopeful about what is to come.
Again, she does check the messages here, all you have to do is click on the “comments” tab.
Friday, June 7, 2013
06/07/2013
After nearly 3 weeks home with her family, Hannah was taken by ambulance to Seattle Children’s last night for pneumonia. Her pneumonia is not responding well to treatment and her bone marrow is no longer making healthy white blood cells. Mark is on his way to Seattle.
The doctors don't offer any hope but Cindy says their faith is strong. She knows that only Heavenly Father can know when it will be Hanna's time to go and believes we all still have a lot we can learn from this sweet little girl. The Shaw's plan on returning home with Hannah as soon as transportation can be arranged. Your prayers and support have been such a strength to the Shaw's, please continue to pray for them in the coming days and weeks.
Expenses have once again become a burden, please consider making generous donations. We can truly alleviate this burden if we all help out.
After nearly 3 weeks home with her family, Hannah was taken by ambulance to Seattle Children’s last night for pneumonia. Her pneumonia is not responding well to treatment and her bone marrow is no longer making healthy white blood cells. Mark is on his way to Seattle.
The doctors don't offer any hope but Cindy says their faith is strong. She knows that only Heavenly Father can know when it will be Hanna's time to go and believes we all still have a lot we can learn from this sweet little girl. The Shaw's plan on returning home with Hannah as soon as transportation can be arranged. Your prayers and support have been such a strength to the Shaw's, please continue to pray for them in the coming days and weeks.
Expenses have once again become a burden, please consider making generous donations. We can truly alleviate this burden if we all help out.
Saturday, May 18, 2013
5/18/1013
From De Anna:
Oh my goodness! I’m just back from visiting with Cindy and Hannah. They are HOME! Hannah looks so good! She was up and about, was able to walk outside unassisted, watch Mark as he worked in the yard, and was just getting ready for a lunch of delicious smelling vegetable soup! The feeling there at the Shaw’s is one of joy, optimism and peace.
Cindy is learning so much about how to support Hannah nutritionally through herbs, oils and all of the wonderful alternatives therapies that exist. She and Mark have repeatedly chosen faith over fear. They look forward to working hand-in-hand with our Heavenly Father to know exactly what He would have them do with His sweet little Hannah.
If you want to visit, they have only one request – please don’t come if you are/have been/ or suspect you might be getting sick. Because of the one dose of Chemo Hannah received (just before going into ICU) her body is unable to fight infection. So if you would, please err on the side of caution.
They are looking forward to a beautiful summer, lots of fun times in the back yard, swimming once the “dumb port” is removed (Hannah is a little fish) and all the good times that lie ahead. Cindy promises that as needs arise, she’ll let us know, but as for now she’s just so happy to have Hannah home and to be able to care for Hannah and her family.
It has been so incredible to see how this family walks in faith. I’ve watched as the enabling power of the Atonement has literally lifted them up, and continues to remove their sorrows and replace them by joy. (To learn more about this power, read here https://www.lds.org/ensign/2013/03/the-enabling-power-of-the-atonement?lang=eng or search it on lds.org) Cindy testified how she knows that, while suffering can bring us to plead with the Lord for this power to come into our lives, once it does the suffering DOES NOT continue! What an awesome testimony and reminder of the incredible power of the Atonement.
This family is in the best hands – those of our Heavenly Father and his son, Jesus Christ. They have so many that love them and are willing to serve them. They feel comforted and want us to all access that same comfort in our lives through the Gospel of Jesus Christ.
What can I say, it was a great visit!
From De Anna:
Oh my goodness! I’m just back from visiting with Cindy and Hannah. They are HOME! Hannah looks so good! She was up and about, was able to walk outside unassisted, watch Mark as he worked in the yard, and was just getting ready for a lunch of delicious smelling vegetable soup! The feeling there at the Shaw’s is one of joy, optimism and peace.
Cindy is learning so much about how to support Hannah nutritionally through herbs, oils and all of the wonderful alternatives therapies that exist. She and Mark have repeatedly chosen faith over fear. They look forward to working hand-in-hand with our Heavenly Father to know exactly what He would have them do with His sweet little Hannah.
If you want to visit, they have only one request – please don’t come if you are/have been/ or suspect you might be getting sick. Because of the one dose of Chemo Hannah received (just before going into ICU) her body is unable to fight infection. So if you would, please err on the side of caution.
They are looking forward to a beautiful summer, lots of fun times in the back yard, swimming once the “dumb port” is removed (Hannah is a little fish) and all the good times that lie ahead. Cindy promises that as needs arise, she’ll let us know, but as for now she’s just so happy to have Hannah home and to be able to care for Hannah and her family.
It has been so incredible to see how this family walks in faith. I’ve watched as the enabling power of the Atonement has literally lifted them up, and continues to remove their sorrows and replace them by joy. (To learn more about this power, read here https://www.lds.org/ensign/2013/03/the-enabling-power-of-the-atonement?lang=eng or search it on lds.org) Cindy testified how she knows that, while suffering can bring us to plead with the Lord for this power to come into our lives, once it does the suffering DOES NOT continue! What an awesome testimony and reminder of the incredible power of the Atonement.
This family is in the best hands – those of our Heavenly Father and his son, Jesus Christ. They have so many that love them and are willing to serve them. They feel comforted and want us to all access that same comfort in our lives through the Gospel of Jesus Christ.
What can I say, it was a great visit!
Thursday, May 16, 2013
05/16/2013
(From De Anna)
I had a chance to talk with Cindy last night. In an nut-shell, the doctors offered very little hope that their treatments would work for Hannah. They have been so loving and supportive of the Take-Home Care and are working with Cindy to put together the best scenario for Hannah. I was able to share with her how much we love both her and Hannah, how our hearts ache for the decisions she and Mark have been faced with, and how we support their inspired direction without judgment. Yet Cindy wanted to share a bit more detail about the path not taken – the Chemo and Radiation – to help anyone who might want to more fully understand, or who might be confused by their decision:
(From Cindy) Remember that these drugs are given in concert with each other. Also consider that, if she survives induction (first 28 days), she will undergo a regime of 8 different drugs given over the course of 42 days, with the potential of repeating that regime up to 5 additional times (for a total of 6 full courses for 242 consecutive days), again with several drugs on board at any given time. This coupled with cranial radiation, a barrage of drugs to deal with side effects and almost assuredly infections, so add in antibiotics and all the gut issues arising there from).
Re-Induction drugs;
Dexamethasone
Vincristine
Peg-aspargase
Mitoxantrone (this is a new poison)
Methotrexate (given via a spinal tap into the spinal fluid and brain)
Intensification drugs: (Given for up to 6 - 42 day courses)
All of the above drugs, plus
Thioguanine
Leucovorin
Cytarabine (ara-c)
Methotrexate (by mouth)
Etoposide (VP-16)
Cyclophosphamide (CPM)
MENSA
Plus cranial radiation given each weekday of the first 30 days after Intensification Phase.
This is what they offer, without real hope. Remission not achieved? Things get worse, with no place to go. Bone marrow transplant is not a good option for Hannah. It is a very dark place to go for a parent of one so innocent.
So, I guess what I am saying is two things, one--become informed before forming a bias, and two, DO WHATEVER IS POSSIBLE TO AVOID CANCER. The 89th section https://www.lds.org/scriptures/dc-testament/dc/89?lang=eng is a good place to start.
And we were worried about caffeine.....silly us.
Cindy
(From De Anna)
I had a chance to talk with Cindy last night. In an nut-shell, the doctors offered very little hope that their treatments would work for Hannah. They have been so loving and supportive of the Take-Home Care and are working with Cindy to put together the best scenario for Hannah. I was able to share with her how much we love both her and Hannah, how our hearts ache for the decisions she and Mark have been faced with, and how we support their inspired direction without judgment. Yet Cindy wanted to share a bit more detail about the path not taken – the Chemo and Radiation – to help anyone who might want to more fully understand, or who might be confused by their decision:
(From Cindy) Remember that these drugs are given in concert with each other. Also consider that, if she survives induction (first 28 days), she will undergo a regime of 8 different drugs given over the course of 42 days, with the potential of repeating that regime up to 5 additional times (for a total of 6 full courses for 242 consecutive days), again with several drugs on board at any given time. This coupled with cranial radiation, a barrage of drugs to deal with side effects and almost assuredly infections, so add in antibiotics and all the gut issues arising there from).
Re-Induction drugs;
Dexamethasone
Vincristine
Peg-aspargase
Mitoxantrone (this is a new poison)
Methotrexate (given via a spinal tap into the spinal fluid and brain)
Intensification drugs: (Given for up to 6 - 42 day courses)
All of the above drugs, plus
Thioguanine
Leucovorin
Cytarabine (ara-c)
Methotrexate (by mouth)
Etoposide (VP-16)
Cyclophosphamide (CPM)
MENSA
Plus cranial radiation given each weekday of the first 30 days after Intensification Phase.
This is what they offer, without real hope. Remission not achieved? Things get worse, with no place to go. Bone marrow transplant is not a good option for Hannah. It is a very dark place to go for a parent of one so innocent.
So, I guess what I am saying is two things, one--become informed before forming a bias, and two, DO WHATEVER IS POSSIBLE TO AVOID CANCER. The 89th section https://www.lds.org/scriptures/dc-testament/dc/89?lang=eng is a good place to start.
And we were worried about caffeine.....silly us.
Cindy
Wednesday, May 15, 2013
05/15/2013
Things here are good. Hannah is on room air and doing beautifully. She is pretty exhausted, I think from the one dose of Chemotherapy she had that put her in the ICU. The side effects of these drugs come in waves. They categorize them as immediate, delayed, and after treatment. This is kind of a delayed effect, you know, kind of sleepy. But she is very comfortable and pleasant. She still eats absolutely nothing, which concerns me a little. I feel she should be gaining a bit of an appetite, but I do know the leukemia causes a loss in appetite too.
We took the canulla off yesterday (we had kept it there as a precaution in case she needed it again) so all she has attached to her now is just her "tubey" and her iv fluids to her line. It's great! She got out of bed and took a little stroll around the room yesterday completely unhooked from everything. It was fun!
Her gut is kind of messed up with all of the antibiotics she has been on causing some pretty extreme diarrhea. They have taken her down to two antibiotics and we hope she can soon get off from those. It will be discussed in rounds this morning.
The struggle to know what to do - whether to start the chemo or whether to take her home and go with a naturopathic approach is still the big question. We came to a vantage point the other day (I think it was Monday) when she started having that bone pain and I decided we should probably go ahead with the hard core reinduction chemo. So they moved us to the floor, I think I already told you all of this, but what I haven't told you is that all that day, after I told them to prepare for the chemo, I had the darkest feeling. I just could not shake it. I really thought that once I made a real decision I would be at peace. Not to be. I struggled with such despair I was just paralyzed. Finally I called Mark and told him to come back. I just could not let them do it to her for some reason. He said for me to tell them not to do anything till he got here and he had a chance to talk with them about a "take home" plan. So he came up yesterday and got here just after morning rounds, wherein I had told them to stop the chemo (which they had scheduled to begin within a few hours) . They were a little taken aback at my flip-flopping, but they recalled the orders and put the chemo on hold.
After Mark arrived we discussed my feelings and by the way, he had been fasting for an answer, but had not really been able to discern any real clear signal. We prayed and counseled with each other and had a very peaceful feeling come over us that we should bring her home. So we had a consult with the attending last evening and they are meeting with me today with the "take home" plan.
We are finally at peace about it. Last night was the best night so far. We felt the comfort of the Holy Ghost more than we have since her rediagnosis. So it looks like we will be coming home! I can't really tell you exactly when until after my meeting today and we determine what is needed as far as therapy before we go, but I don't think it will be very long. I'll let you know.
I am studying all kinds of alternative treatments and it is interesting how many of the alternative methods I have previously studied through the years. I am pretty familiar with the protocols involving vitamin C, vitamin B17 and calcium. The Gerson diet is another one I spent some time on when I was studying. So I really feel strongly that the Lord has been stacking up the bricks for a while. The more I settle into the take-home plan the better I feel about it. I am so thankful for the peace that has finally come.
So....I will keep you posted on what comes next. It was wonderful to have Mark and Holly here yesterday, I even left the hospital for an hour or so and went over to the Goodwill up in the University District and did some browsing around. It was nice to be able to get my mind off from this situation. And it was actually the first time I have been able to mentally break from it. I know it is because we have finally received the answer.
Whatever happens with my Hannah, I know things will be okay. Heavenly Father is guiding and comforting us and we feel his kind influence.
Cindy
Things here are good. Hannah is on room air and doing beautifully. She is pretty exhausted, I think from the one dose of Chemotherapy she had that put her in the ICU. The side effects of these drugs come in waves. They categorize them as immediate, delayed, and after treatment. This is kind of a delayed effect, you know, kind of sleepy. But she is very comfortable and pleasant. She still eats absolutely nothing, which concerns me a little. I feel she should be gaining a bit of an appetite, but I do know the leukemia causes a loss in appetite too.
We took the canulla off yesterday (we had kept it there as a precaution in case she needed it again) so all she has attached to her now is just her "tubey" and her iv fluids to her line. It's great! She got out of bed and took a little stroll around the room yesterday completely unhooked from everything. It was fun!
Her gut is kind of messed up with all of the antibiotics she has been on causing some pretty extreme diarrhea. They have taken her down to two antibiotics and we hope she can soon get off from those. It will be discussed in rounds this morning.
The struggle to know what to do - whether to start the chemo or whether to take her home and go with a naturopathic approach is still the big question. We came to a vantage point the other day (I think it was Monday) when she started having that bone pain and I decided we should probably go ahead with the hard core reinduction chemo. So they moved us to the floor, I think I already told you all of this, but what I haven't told you is that all that day, after I told them to prepare for the chemo, I had the darkest feeling. I just could not shake it. I really thought that once I made a real decision I would be at peace. Not to be. I struggled with such despair I was just paralyzed. Finally I called Mark and told him to come back. I just could not let them do it to her for some reason. He said for me to tell them not to do anything till he got here and he had a chance to talk with them about a "take home" plan. So he came up yesterday and got here just after morning rounds, wherein I had told them to stop the chemo (which they had scheduled to begin within a few hours) . They were a little taken aback at my flip-flopping, but they recalled the orders and put the chemo on hold.
After Mark arrived we discussed my feelings and by the way, he had been fasting for an answer, but had not really been able to discern any real clear signal. We prayed and counseled with each other and had a very peaceful feeling come over us that we should bring her home. So we had a consult with the attending last evening and they are meeting with me today with the "take home" plan.
We are finally at peace about it. Last night was the best night so far. We felt the comfort of the Holy Ghost more than we have since her rediagnosis. So it looks like we will be coming home! I can't really tell you exactly when until after my meeting today and we determine what is needed as far as therapy before we go, but I don't think it will be very long. I'll let you know.
I am studying all kinds of alternative treatments and it is interesting how many of the alternative methods I have previously studied through the years. I am pretty familiar with the protocols involving vitamin C, vitamin B17 and calcium. The Gerson diet is another one I spent some time on when I was studying. So I really feel strongly that the Lord has been stacking up the bricks for a while. The more I settle into the take-home plan the better I feel about it. I am so thankful for the peace that has finally come.
So....I will keep you posted on what comes next. It was wonderful to have Mark and Holly here yesterday, I even left the hospital for an hour or so and went over to the Goodwill up in the University District and did some browsing around. It was nice to be able to get my mind off from this situation. And it was actually the first time I have been able to mentally break from it. I know it is because we have finally received the answer.
Whatever happens with my Hannah, I know things will be okay. Heavenly Father is guiding and comforting us and we feel his kind influence.
Cindy
Tuesday, May 14, 2013
05/14/2013
Hannah is doing well! We were moved out of ICU this morning. She has continued to improve and is on room air for most of the day.
The plan for Hannah is still unfolding. I am praying and pondering it and trying to feel an assurance that it is right. ........not yet come.
The problem is, that she is just doing so well. She is just beautiful and calm and peaceful and looks so well. But, I do know that the cancer is brewing. Last evening just after Mark left she started to complain of bone pain in both thighs. It came on rather quickly and then subsided. After a few hours it became more acute and we gave her.... We expected it to sedate her as well as take away the bone pain. Not to be. Oh, the pain left but she just totally became animated and very giddy. She and I watched 4 movies between 10 pm and 4 am. She was adorable. Laughing and responding to the characters on the screen and just pretty much partying all night. She finally dozed off after 4 and has been peacefully resting for most of the day. I have just been enjoying her peaceful state. The thought of pouring the poison into her is unbearable.
Pray that we can settle on the right strategy. I am so worn out of it all. I have cried buckets of tears and my heart is tired, but I know I am not alone. I was visited by two of the Relief Society Presidents from the previous ward I went to when we were here before. It was wonderful to visit and they had many comforting words. The Church is such a magnificent organization providing for us in our times of need. The Bishop and Jan came on Saturday night and we had a great visit. On Sunday morning they came and administered the Sacrament and it was a very sweet experience. Where would we be without The Gospel and The Church? Unimaginable.
Hannah is doing well! We were moved out of ICU this morning. She has continued to improve and is on room air for most of the day.
The plan for Hannah is still unfolding. I am praying and pondering it and trying to feel an assurance that it is right. ........not yet come.
The problem is, that she is just doing so well. She is just beautiful and calm and peaceful and looks so well. But, I do know that the cancer is brewing. Last evening just after Mark left she started to complain of bone pain in both thighs. It came on rather quickly and then subsided. After a few hours it became more acute and we gave her.... We expected it to sedate her as well as take away the bone pain. Not to be. Oh, the pain left but she just totally became animated and very giddy. She and I watched 4 movies between 10 pm and 4 am. She was adorable. Laughing and responding to the characters on the screen and just pretty much partying all night. She finally dozed off after 4 and has been peacefully resting for most of the day. I have just been enjoying her peaceful state. The thought of pouring the poison into her is unbearable.
Pray that we can settle on the right strategy. I am so worn out of it all. I have cried buckets of tears and my heart is tired, but I know I am not alone. I was visited by two of the Relief Society Presidents from the previous ward I went to when we were here before. It was wonderful to visit and they had many comforting words. The Church is such a magnificent organization providing for us in our times of need. The Bishop and Jan came on Saturday night and we had a great visit. On Sunday morning they came and administered the Sacrament and it was a very sweet experience. Where would we be without The Gospel and The Church? Unimaginable.
Sunday, May 12, 2013
05/12/2013
Hannah is doing better through yesterday and through the night. We have been able to get her off from the "dumb mask" (the pressure mask) and on to the smaller mask and then finally last evening we got her back on the cannula and she is pretty much at par with where she was when this whole crash started. She will be in ICU I think for a day or maybe a few days longer if she continues on this trend. They are placing an NG tube ("dumb tubey") this afternoon so we can get something into her gut. The xrays today show again, mild improvement in her lungs, still some fluid and haziness but improvement. We are all happy with her progress. She is still bugged by the "dumb port" but she is getting used to the idea. I am crocheting her a little "blanket" for it so we can cover it up and put it out of sight--that comforts her--It really looks more like a dishcloth but hey, it works.
So I hope you have a wonderful Mother's Day and Sabbath. Five of our sons and Holly are here with Mark and Hannah me and we will be hearing from Elder Shaw in Nevada this evening and Elder Shaw in Brazil tomorrow. All in all, our life is wonderful in spite of our trials. I consider how the Lord could bless me more and i can't see how that would be possible. We feel the growth process taking place in us. I,most likely, would not choose this exact scenario, but I am well aware that God knows more what I need than i do, so here we go.........I have felt the Saviors power to heal and lift and support. He is real. The work we are engaged in is real. Hannah is in his care and under his watchful eye.
Thanks for your faith and prayers and we plead that you continue to petition the Lord to sustain Hannah in her trial.
Your sister
Cindy
Hannah is doing better through yesterday and through the night. We have been able to get her off from the "dumb mask" (the pressure mask) and on to the smaller mask and then finally last evening we got her back on the cannula and she is pretty much at par with where she was when this whole crash started. She will be in ICU I think for a day or maybe a few days longer if she continues on this trend. They are placing an NG tube ("dumb tubey") this afternoon so we can get something into her gut. The xrays today show again, mild improvement in her lungs, still some fluid and haziness but improvement. We are all happy with her progress. She is still bugged by the "dumb port" but she is getting used to the idea. I am crocheting her a little "blanket" for it so we can cover it up and put it out of sight--that comforts her--It really looks more like a dishcloth but hey, it works.
So I hope you have a wonderful Mother's Day and Sabbath. Five of our sons and Holly are here with Mark and Hannah me and we will be hearing from Elder Shaw in Nevada this evening and Elder Shaw in Brazil tomorrow. All in all, our life is wonderful in spite of our trials. I consider how the Lord could bless me more and i can't see how that would be possible. We feel the growth process taking place in us. I,most likely, would not choose this exact scenario, but I am well aware that God knows more what I need than i do, so here we go.........I have felt the Saviors power to heal and lift and support. He is real. The work we are engaged in is real. Hannah is in his care and under his watchful eye.
Thanks for your faith and prayers and we plead that you continue to petition the Lord to sustain Hannah in her trial.
Your sister
Cindy
Saturday, May 11, 2013
05/11/2013
Well, today went well. Hannah made it through the toughest day ever yesterday, but today she has rallied like the determined soul she is. This morning we were able to start to wean down on her oxygen as well as the sedative. We have reduced the pressures in the mask and she is tolerating it better, I guess she is getting used to it. We are hopeful to start to give her short reprieves from it to see how she does. I feel confident it won't be but a few days and she will be off from it completely. Hopefully we can get her back onto the cannula by tomorrow evening, that might be a little over hopeful but why not, right?
She is able to communicate and talk with us, she is still mildly sedated but it is indeed very mild, just to take the anxiety away. He pneumonia is improving little by little. The x-rays this morning showed slight improvement but her mood and energy level are even more encouraging. She is pretty sassy at times! It's great !
They started TPN feeding finally today (sugars/nutrients and lipids through the central line). I have struggled with the nutrition issue for days now and am glad to get this started. I would like to have had the ng tube placed but it would have required too much time off from the mask. The docs said we will start here and move to that soon. Anyway, at least I am not starving my child anymore. That has bugged me sooooo bad.
The kids will be coming tomorrow sometime. Our son Levi and daughter Camilla will be looking after things at home while the kids are away. Mark will return with them on Sunday evening if all things continue to progress with Hannah as we hope they will.
Well, today went well. Hannah made it through the toughest day ever yesterday, but today she has rallied like the determined soul she is. This morning we were able to start to wean down on her oxygen as well as the sedative. We have reduced the pressures in the mask and she is tolerating it better, I guess she is getting used to it. We are hopeful to start to give her short reprieves from it to see how she does. I feel confident it won't be but a few days and she will be off from it completely. Hopefully we can get her back onto the cannula by tomorrow evening, that might be a little over hopeful but why not, right?
She is able to communicate and talk with us, she is still mildly sedated but it is indeed very mild, just to take the anxiety away. He pneumonia is improving little by little. The x-rays this morning showed slight improvement but her mood and energy level are even more encouraging. She is pretty sassy at times! It's great !
They started TPN feeding finally today (sugars/nutrients and lipids through the central line). I have struggled with the nutrition issue for days now and am glad to get this started. I would like to have had the ng tube placed but it would have required too much time off from the mask. The docs said we will start here and move to that soon. Anyway, at least I am not starving my child anymore. That has bugged me sooooo bad.
The kids will be coming tomorrow sometime. Our son Levi and daughter Camilla will be looking after things at home while the kids are away. Mark will return with them on Sunday evening if all things continue to progress with Hannah as we hope they will.
Friday, May 10, 2013
05/10/2013
From Cindy: So I have had quite a day. Yesterday (Wednesday) Hannah had her best day ever! She was face-timing with her siblings and really being herself. She even began to get her appetite back a little. She let me syringe feed her about 12 oz. of milk which was fantastic. Then at about 10 pm they arrived with the first doses of Chemotherapy drugs. They administered them at 10 and 11pm. By 2am she was having problems with her oxygen sats. She kept de-sating. Down to like the mid to low 80's then bouncing up to low 90's. We increased her oxygen and changed from the cannula to a mask but things just didn't improve. Finally we couldn't keep her above 90% and they called in the docs. By 3 they booked her a room in the ICU and by 4 we were there. It was terrible. She was so traumatized and exhausted. They ended up giving her sedatives to calm her and keep her from panicking about the mask.
She has done well today. Although I hate the sedation situation, I am grateful that she is comfortable. They are allowing me to use the essential oils which I am grateful for too. Tomorrow I am going to see about the n g tube so we can deliver some nutrition. If Heavenly Father will preserve her long enough for us to be able to get some of these natural remedies on board it will be fantastic. Pray for that.
I have to say that the nurses are so wonderful to us. They and the Drs. are okay with our smelling up the room with the beautiful scents of these ancient oils. The room smells like I am cooking thanksgiving and making candy canes all at once! It's kinda funny. It really isn't a strong smell, just a gentle waft when you get close to her feet. It feels good to rub them in and feel like I am helping a little. I can't tell if she is aware of what I am doing but I just know she feels my love and presence. I think it is such kind therapy apposed to the clinical and sterile chemo.
From Cindy: So I have had quite a day. Yesterday (Wednesday) Hannah had her best day ever! She was face-timing with her siblings and really being herself. She even began to get her appetite back a little. She let me syringe feed her about 12 oz. of milk which was fantastic. Then at about 10 pm they arrived with the first doses of Chemotherapy drugs. They administered them at 10 and 11pm. By 2am she was having problems with her oxygen sats. She kept de-sating. Down to like the mid to low 80's then bouncing up to low 90's. We increased her oxygen and changed from the cannula to a mask but things just didn't improve. Finally we couldn't keep her above 90% and they called in the docs. By 3 they booked her a room in the ICU and by 4 we were there. It was terrible. She was so traumatized and exhausted. They ended up giving her sedatives to calm her and keep her from panicking about the mask.
She has done well today. Although I hate the sedation situation, I am grateful that she is comfortable. They are allowing me to use the essential oils which I am grateful for too. Tomorrow I am going to see about the n g tube so we can deliver some nutrition. If Heavenly Father will preserve her long enough for us to be able to get some of these natural remedies on board it will be fantastic. Pray for that.
I have to say that the nurses are so wonderful to us. They and the Drs. are okay with our smelling up the room with the beautiful scents of these ancient oils. The room smells like I am cooking thanksgiving and making candy canes all at once! It's kinda funny. It really isn't a strong smell, just a gentle waft when you get close to her feet. It feels good to rub them in and feel like I am helping a little. I can't tell if she is aware of what I am doing but I just know she feels my love and presence. I think it is such kind therapy apposed to the clinical and sterile chemo.
Thursday, May 9, 2013
Tuesday, May 7, 2013
05/07/2013
From De Anna:
Just talked to Cindy – she expressed her gratitude at witnessing the hand of the Lord in their lives and for His direction and His peace. After counseling with doctors today, she and Mark have decided to do a minimal dose of chemotherapy which will start tomorrow. It will just last a few days, after which a drug that is designed to build up Hannah’s immune system will be administered. All this will be done with the hope of beating back the cancer enough that Hannah will be able to fight the pneumonia. Her body just doesn’t have the resources to do that right now. She asked that we pray for Hannah – specifically that she will be able to beat this pneumonia quickly. Their goal is that Hannah recovers enough to be allowed to leave the hospital and ultimately return home so that she can be surrounded by those she loves and all that’s familiar. Cindy says her heart’s desire is for a miracle; complete healing, if that is the Lord’s will. Just as quickly as she said that, she began to acknowledge the countless miracles that have already occurred, thanks to so many of you. Thank you all for your support and prayers.
From De Anna:
Just talked to Cindy – she expressed her gratitude at witnessing the hand of the Lord in their lives and for His direction and His peace. After counseling with doctors today, she and Mark have decided to do a minimal dose of chemotherapy which will start tomorrow. It will just last a few days, after which a drug that is designed to build up Hannah’s immune system will be administered. All this will be done with the hope of beating back the cancer enough that Hannah will be able to fight the pneumonia. Her body just doesn’t have the resources to do that right now. She asked that we pray for Hannah – specifically that she will be able to beat this pneumonia quickly. Their goal is that Hannah recovers enough to be allowed to leave the hospital and ultimately return home so that she can be surrounded by those she loves and all that’s familiar. Cindy says her heart’s desire is for a miracle; complete healing, if that is the Lord’s will. Just as quickly as she said that, she began to acknowledge the countless miracles that have already occurred, thanks to so many of you. Thank you all for your support and prayers.
05/07/2013
Yesterday De Anna and I were able to visit Hannah and Cindy. We took some packages to Hannah from Hannah's primary class and from the Activity Day girls. Hannah loved pulling card after card out of the envelope, it really cheered her up. Cindy said it was the most animated she'd seen her in days. It was wonderful to see Cindy and watch the beautiful interactions between the two of them.
Mark was on his way up last night with Ammon and Holly. I know Hannah will be happy to see them, she kept calling for her dad while we were there. She is such a sweet, beautiful girl.
Yesterday De Anna and I were able to visit Hannah and Cindy. We took some packages to Hannah from Hannah's primary class and from the Activity Day girls. Hannah loved pulling card after card out of the envelope, it really cheered her up. Cindy said it was the most animated she'd seen her in days. It was wonderful to see Cindy and watch the beautiful interactions between the two of them.
Mark was on his way up last night with Ammon and Holly. I know Hannah will be happy to see them, she kept calling for her dad while we were there. She is such a sweet, beautiful girl.
May 7, 2013
Saturday, May 4, 2013
05/04/2013
From De Anna:
"I spoke with Mark just a few minutes ago. He got home about 6pm. They are in a holding pattern right now. Didn’t start the chemo because the pneumonia is still there and they want to get more info before proceeding. Their hope is to get all the different specialists together in the same room early next week and have a frank discussion about treatment, prognosis and where to go from here, Mark plans to go back up for that meeting.
"Mark says it’s tricky because it is highly unusual for a child with Down Syndrome to relapse – so much so that they have no protocol as to the success of treatment. They don’t want to go ahead without having a clearer picture of what they’d be subjecting Hannah to and the doctors are uncertain. They are relying entirely on inspiration which they hope will come soon. They are so grateful for all the help that has been offered and those who are fasting right now."
From De Anna:
"I spoke with Mark just a few minutes ago. He got home about 6pm. They are in a holding pattern right now. Didn’t start the chemo because the pneumonia is still there and they want to get more info before proceeding. Their hope is to get all the different specialists together in the same room early next week and have a frank discussion about treatment, prognosis and where to go from here, Mark plans to go back up for that meeting.
"Mark says it’s tricky because it is highly unusual for a child with Down Syndrome to relapse – so much so that they have no protocol as to the success of treatment. They don’t want to go ahead without having a clearer picture of what they’d be subjecting Hannah to and the doctors are uncertain. They are relying entirely on inspiration which they hope will come soon. They are so grateful for all the help that has been offered and those who are fasting right now."
Friday, May 3, 2013
05/03/2013
To all our friends, family and loved ones who have so graciously and generously contributed to our family at this time of our need, we want to extend our sincerest thanks. We have been humbled by your immediate responses and outpouring of love. Our burdens have been made lighter because of you. Hannah's physicians have prepared her to begin her chemotherapy today. Although she is still battling pneumonia, we need to address the aggressive cancer. Please continue to petition Heavenly Father that her "burden may be light, that she feel it not". We love you and appreciate your support.
Hannah and the Shaw family
To all our friends, family and loved ones who have so graciously and generously contributed to our family at this time of our need, we want to extend our sincerest thanks. We have been humbled by your immediate responses and outpouring of love. Our burdens have been made lighter because of you. Hannah's physicians have prepared her to begin her chemotherapy today. Although she is still battling pneumonia, we need to address the aggressive cancer. Please continue to petition Heavenly Father that her "burden may be light, that she feel it not". We love you and appreciate your support.
Hannah and the Shaw family
Thursday, May 2, 2013
05/02/2013
Deanna just got off the phone with Cindy. Hannah's pneumonia is not improving even though she's been on antibiotics for days. They are having to increase her oxygen in order to keep her saturation up. Oxygen mask, IV's, tubes everywhere... making it hard for Cindy to just pick up and cuddle sweet little Hannah. In just a few hours, they will begin procedures on Hannah (port placement (central line), bone marrow aspiration and a spinal fluid draw), and begin Chemo. The hope is that the pneumonia may be cancer-related and the Chemo will help. She expressed her gratitude again and again for the prayers and financial support that's been given thus far. Last time Hannah went through this ordeal, financial worries were a compressing burden on the family that were ever-present. Let's make sure that worry is put to rest this time around! Although Cindy is too busy to take personal calls at this time, she said she loves to read your words of love and support (post here!), and welcomes emails/cards.
Deanna just got off the phone with Cindy. Hannah's pneumonia is not improving even though she's been on antibiotics for days. They are having to increase her oxygen in order to keep her saturation up. Oxygen mask, IV's, tubes everywhere... making it hard for Cindy to just pick up and cuddle sweet little Hannah. In just a few hours, they will begin procedures on Hannah (port placement (central line), bone marrow aspiration and a spinal fluid draw), and begin Chemo. The hope is that the pneumonia may be cancer-related and the Chemo will help. She expressed her gratitude again and again for the prayers and financial support that's been given thus far. Last time Hannah went through this ordeal, financial worries were a compressing burden on the family that were ever-present. Let's make sure that worry is put to rest this time around! Although Cindy is too busy to take personal calls at this time, she said she loves to read your words of love and support (post here!), and welcomes emails/cards.
05/02/2013
Update from Cindy: Several drs have examined Hannah today including the Pedes dentist and the surgeon who will place her line, he left a few minutes ago. We learned today that these cells are the same as the original cancer, which is relief to me because they aren't mutated and they have an established protocol for treatment. We will keep you posted on anything else that happens. Share our love.
Update from Cindy: Several drs have examined Hannah today including the Pedes dentist and the surgeon who will place her line, he left a few minutes ago. We learned today that these cells are the same as the original cancer, which is relief to me because they aren't mutated and they have an established protocol for treatment. We will keep you posted on anything else that happens. Share our love.
Wednesday, May 1, 2013
05/01/2013
Update from Cindy 5/1/13:
Hannah is recognizing the surroundings here, she is beginning to understand why we are here and is saddened by it. She is struggling most with the breathing/oxygen mask right now. She is exhausted and overwhelmed at times but I am able to comfort her, which is what I spend most of the time doing. Tomorrow morning she will go to surgery for port placement (central line), bone marrow aspiration and a spinal fluid draw. Needless to say it will be a tough day. We will be waiting for the results from those procedures before we can determine treatment.
Update from Cindy 5/1/13:
Hannah is recognizing the surroundings here, she is beginning to understand why we are here and is saddened by it. She is struggling most with the breathing/oxygen mask right now. She is exhausted and overwhelmed at times but I am able to comfort her, which is what I spend most of the time doing. Tomorrow morning she will go to surgery for port placement (central line), bone marrow aspiration and a spinal fluid draw. Needless to say it will be a tough day. We will be waiting for the results from those procedures before we can determine treatment.
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