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!
Saturday, May 18, 2013
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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