Hudson's smile and laugh makes each day brighter!
Sunday, April 21, 2013
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Hudson's smile and laugh makes each day brighter!
A Renewing Weekend
Friday morning was quite a start. Ainsley had to be out the door by 715. She was anxious about going to the hospital and "getting poked by the needle." She was also very anxious about getting the tape removed at the end of the day. So, waking up, getting dressed, getting in the car, etc were each met with a vigorous battle. Jenny and I decided to take a 2 minute break to regain our sanity while Ainsley through a fit in the other room, Hudson screamed from his bouncer, and the other girls moaned about getting up to go to school. It was chaos, so we just snuggled. We talked about the scripture "by small and simple things, are great things brought to pass." We tried to think of what small adjustments we could make to lighten the day to day strains. We thought of the story of the camel (see earlier post) and had a prayer in our hearts about what could be done to lighten the burden today. Just as we were talking about that, we heard Hudson yell out "Mmmmmmooooommmmm" from the other room! It was the first time he has made those sounds! You would not believe the shot of energy that was for Jenny! She shot up, ran into him and started to laugh and play with him. He smiled and coo'd back at her. Way to go son! Making your Mama happy!
Ainsley was definitely not happy about getting her port accessed, her Lumbar Puncture, and multiple chemo treatments. But she cheered up when our friends Tiff and Sadie came to visit. What a boost to the spirits! Thanks for the bubbles and treats ladies! Thanks also for taking the other girls Friday afternoon/evening! They had so much fun!
Saturday was nice. We got up and cleaned the house. It was a beautiful, sunny day! We took the family and dogs for a walk through the park where the girls got to play and have a great time. Jenny and I got to go out on a date Saturday night with our dear friends Sara and Andy. We got to meet Sara's parents! It was so fun!
That night we got a call from our Stake President, President Johnson. Bishop Davies of the Presiding Bishopric was in town from Salt Lake City for a special Stake Conference on Sunday and wanted to meet with our family. So we got up Sunday morning and drove down to the Stake Center where we got to meet with Bishop Davies and President Johnson. The three of us were able to administer a Priesthood blessing to Ainsley. He sat and spoke with our family and there was such a tender and comforting Spirit there. Bishop Davies had given a talk in General Conference a few weeks ago, and we had so much fun hearing him relate the experiences of preparing and giving the talk. On the way to the stake center, we had discussed as a family about his to talk and the keys that he said would help us to build a solid foundation of faith and testimony. What a neat experience we will treasure forever!
Ainsley was definitely not happy about getting her port accessed, her Lumbar Puncture, and multiple chemo treatments. But she cheered up when our friends Tiff and Sadie came to visit. What a boost to the spirits! Thanks for the bubbles and treats ladies! Thanks also for taking the other girls Friday afternoon/evening! They had so much fun!
Saturday was nice. We got up and cleaned the house. It was a beautiful, sunny day! We took the family and dogs for a walk through the park where the girls got to play and have a great time. Jenny and I got to go out on a date Saturday night with our dear friends Sara and Andy. We got to meet Sara's parents! It was so fun!
That night we got a call from our Stake President, President Johnson. Bishop Davies of the Presiding Bishopric was in town from Salt Lake City for a special Stake Conference on Sunday and wanted to meet with our family. So we got up Sunday morning and drove down to the Stake Center where we got to meet with Bishop Davies and President Johnson. The three of us were able to administer a Priesthood blessing to Ainsley. He sat and spoke with our family and there was such a tender and comforting Spirit there. Bishop Davies had given a talk in General Conference a few weeks ago, and we had so much fun hearing him relate the experiences of preparing and giving the talk. On the way to the stake center, we had discussed as a family about his to talk and the keys that he said would help us to build a solid foundation of faith and testimony. What a neat experience we will treasure forever!
Wednesday, April 17, 2013
Friendship
I wanted to share a conversation my dear friend Mandy witnessed between Ainsley and her son Matthew...
On Thursday I had the special opportunity to take Ainsley for a ride. I was so thrilled! For a few moments she was going to come to our house to play. It has been just over four weeks since she has been to our house to play and Matthew was missing his friend. We had to pickup Matthew from Joy School so we headed to Liz Covingintons house. On the way there Ainsley and I talked about the Covington's kitties and how big they have grown since she last saw them, that we hoped they were outside so she could see them through the window of the car. She talked and I listened. It was great. We didn't have the radio on or any other distractions just Ainsley, Chloe and I talking about the simple but amazing things this world has to offer. When we arrived I jumped out of the car and ran to the door. The first thing I said to Matthew was, "Guess what, I have a surprise in the backseat of the car for you. You are going to love it!" He sat quickly and quietly to put on his shoes and ran out the door. When I got to the car he leaned over to me and said, "Is Ainsley my surprise!" I replied, "yes." " That is awesome!" was his response. Then he sat down next to her and put on his seat belt and I began to drive. Than I heard his sweet innocent voice say. "Your cheeks are too round. You are not Ainsley." My heart sank. She replied' " Yes I am Ainsley." "No, Ainsley doesn't have round cheeks like that." Once again came the reply, "Yes, I am Ainsley." I didn't know what to do. I said a quick and silent prayer and then came the question. "Mandy, why are my cheeks so round?" I explained to them in simpled terms why Ainsley"s appearance seemed a little different and then I said, "But look it is still her beautiful smile, (a huge smile came across her face) and her beautiful eyes." At that moment Matthew gently reached over and put a hand on her cheek and said, "It is you Ainsley!" It brought tears to my eyes. We had so much fun that afternoon. They played like nothing had changed, except that Chloe likes to play too. One of my favorite moments is when Chloe said, "Come play in my room." and they ran, hand in hand, to Chloe's room and came out with girl stuff. I am beginning to understand that it is the small moments of Joy and Peace that come after the trials that make this life so worth it. Thank you for allowing us to be a part of your journey.
On Thursday I had the special opportunity to take Ainsley for a ride. I was so thrilled! For a few moments she was going to come to our house to play. It has been just over four weeks since she has been to our house to play and Matthew was missing his friend. We had to pickup Matthew from Joy School so we headed to Liz Covingintons house. On the way there Ainsley and I talked about the Covington's kitties and how big they have grown since she last saw them, that we hoped they were outside so she could see them through the window of the car. She talked and I listened. It was great. We didn't have the radio on or any other distractions just Ainsley, Chloe and I talking about the simple but amazing things this world has to offer. When we arrived I jumped out of the car and ran to the door. The first thing I said to Matthew was, "Guess what, I have a surprise in the backseat of the car for you. You are going to love it!" He sat quickly and quietly to put on his shoes and ran out the door. When I got to the car he leaned over to me and said, "Is Ainsley my surprise!" I replied, "yes." " That is awesome!" was his response. Then he sat down next to her and put on his seat belt and I began to drive. Than I heard his sweet innocent voice say. "Your cheeks are too round. You are not Ainsley." My heart sank. She replied' " Yes I am Ainsley." "No, Ainsley doesn't have round cheeks like that." Once again came the reply, "Yes, I am Ainsley." I didn't know what to do. I said a quick and silent prayer and then came the question. "Mandy, why are my cheeks so round?" I explained to them in simpled terms why Ainsley"s appearance seemed a little different and then I said, "But look it is still her beautiful smile, (a huge smile came across her face) and her beautiful eyes." At that moment Matthew gently reached over and put a hand on her cheek and said, "It is you Ainsley!" It brought tears to my eyes. We had so much fun that afternoon. They played like nothing had changed, except that Chloe likes to play too. One of my favorite moments is when Chloe said, "Come play in my room." and they ran, hand in hand, to Chloe's room and came out with girl stuff. I am beginning to understand that it is the small moments of Joy and Peace that come after the trials that make this life so worth it. Thank you for allowing us to be a part of your journey.
Monday, April 15, 2013
Kicking Cancer's Butt!
The other day I was holding Ainsley. She had a huge smile on her face and looked at me with an eager grin and said "Daddy, when the cancer is out of my blood...because I'm going to KICK IT'S BUTT...then I'm going to have grapes!" My response: "Baby girl, you WILL kick cancer's but and let's make a list of all the things you want to do when you are done kicking cancer's butt, and we'll do them all!" (She is unable to have fresh fruits and vegetables that don't have a peel because of the risk to her immune system if they are not completely clean. Cooked or frozen are okay, though.) So far, she wants to have a party at the park as well as eat grapes.
I also love to ask her: "Hey Ainsley, did cancer pick the right girl or the wrong girl?" She grins and says "the wrong girl...I'm gonna kick it's butt!" Be still my heart! What a girl!
This week has been busy, hence the absence of updates. Monday is another dose of chemo at the hospital and then she gets a 4 day break before going back for more! She loves those days in-between treatments. She'll ask us "how many days till I go back to the hospital?"
She has started to get sores in her mouth, which is a common thing in chemotherapy. The fix is a mouth rinse that she is supposed to swish around and then spit out. She hates it. Her ANC (body's ability to fight infections) is back down again as the effects of the new chemo regimen takes place, so she is back to wearing her mask while in public places. She puts it on like a champ. It's always amazes me how adaptable kids are.
We have had both sets of Grandparents in town and a surprise visit from Uncle Jeff this weekend. It was Rhyan's baptism and birthday as well as Hudson's baby blessing. We'll hope to update photos and such from those. Due to precautions with Ainsley's lowered immune system and timing between her treatments, we did the baptism and baby blessing on Sunday evening. It was a very special night and we are so grateful for the love and support of so many of you.
I guess that will have to be it, I need to go back to sleep, but realized that it had been over a week since we'd posted. Ainsley's spirits have been up this past week, which has been such a boost to us. Seeing this little girl get to run and play brings feelings of absolute ELATION! What a girl Ainsley! We love you!
P.S. Thank you for all of your support for the bracelets. We have a new order coming and I will let you know when it arrives. Also, we are getting feedback that the Youth-sized bracelet is preferred by many adult women as well. Jenny wears the youth size and Bryan wears the adult size.
I also love to ask her: "Hey Ainsley, did cancer pick the right girl or the wrong girl?" She grins and says "the wrong girl...I'm gonna kick it's butt!" Be still my heart! What a girl!
This week has been busy, hence the absence of updates. Monday is another dose of chemo at the hospital and then she gets a 4 day break before going back for more! She loves those days in-between treatments. She'll ask us "how many days till I go back to the hospital?"
She has started to get sores in her mouth, which is a common thing in chemotherapy. The fix is a mouth rinse that she is supposed to swish around and then spit out. She hates it. Her ANC (body's ability to fight infections) is back down again as the effects of the new chemo regimen takes place, so she is back to wearing her mask while in public places. She puts it on like a champ. It's always amazes me how adaptable kids are.
We have had both sets of Grandparents in town and a surprise visit from Uncle Jeff this weekend. It was Rhyan's baptism and birthday as well as Hudson's baby blessing. We'll hope to update photos and such from those. Due to precautions with Ainsley's lowered immune system and timing between her treatments, we did the baptism and baby blessing on Sunday evening. It was a very special night and we are so grateful for the love and support of so many of you.
I guess that will have to be it, I need to go back to sleep, but realized that it had been over a week since we'd posted. Ainsley's spirits have been up this past week, which has been such a boost to us. Seeing this little girl get to run and play brings feelings of absolute ELATION! What a girl Ainsley! We love you!
P.S. Thank you for all of your support for the bracelets. We have a new order coming and I will let you know when it arrives. Also, we are getting feedback that the Youth-sized bracelet is preferred by many adult women as well. Jenny wears the youth size and Bryan wears the adult size.
Sunday, April 7, 2013
Not the News We Wanted
Friday was quite a day. I had surgeries and was on call for the weekend. Thursday afternoon they called to tell us Ainsley would be admitted for an overnight stay on Friday. So Superwoman (known to most of you as Jenny) got all the kids up and to the various friend's houses that they needed to be to by 7:15 am, and got Ainsley down to the Children's hospital by 8:00 am. They accessed her port and got things rolling. Amazing, Jenny, absolutely amazing.
I was in surgery when the doctors delivered the news to Jenny about the results of Ainsley's bone marrow biopsy. If we go back to the analogy of the weeds in the lawn, after the first 29 days of chemo (induction phase) we should find that the weeds are gone. This is called the "minimal residual disease" or MRD. There are essentially 3 categories you fall into after that: low risk of recurrence (no weeds), standard risk, or high risk (still weeds). Ainsley still has cancer cells in her marrow, and she falls into the high risk category. Not what we wanted to hear. Jenny got the information on her own, and sent it to me in text form. It was an excruciating few hours until the surgery finished before I was able to call Jenny to talk to her. I got to stop by for a few minutes and give Jenny and Ainsley hugs, then it was off again to the hospital. It was about 830pm before I was able to get back to them and start processing what had happened.
What it all means is this: Before, we were swinging with a hammer to cure the Leukemia. Since Ainsley is now in the high risk category, we will now be swinging with a sledge hammer. Higher chance of fevers and medicine side effects, more frequent chemotherapy doses and more frequent trips to the hospital. She'll be getting lumbar punctures 6 of the next 8 weeks and instead of just weekly visits, she'll be adding 4 days a week for 4 of the next 8 weeks. Sledge hammer dropping.
So, it was a hard weekend for Jenny and I. The girls had a great weekend, thankfully. They played with friends, and our friend Cher, stayed overnight with them Friday night. They have not stopped talking about the fun that they had! We are so grateful that through all of this, the kids seem to be able to enjoy life, thank you in large part to the amazing friends, teachers, and primary leaders that are constantly sharing their love and support.
On a much happier note, Ainsley's amazing personality has started to come back as the steroids have exited her system. She is back to laughing and playing. For those that missed it, here is her response to the wonderful Zumba fundraiser held for her by our dear friends in Arizona. Thank you Becca, Zumba Jill, and Prestige Dance Academy. Thank you to all that attended and shook your booties!
Here's a fun picture of her with her American Girl doll, Belle. Notice the matching pajamas, thanks to Grammy. She was laughing with the nurses this weekend as she spent most of it in the hospital. This girl is amazing. She was so funny walking up and down the halls, pushing her dolly in the stroller. She is also amazing at comforting and watching over Hudson. She loves to snuggle him. Lead on Ainsley! We are following your lead and love you to pieces.
It was General Conference from Salt Lake City this weekend and we are eagerly looking forward to watching it. We were in one (or more) hospitals and didn't get to follow it. We know there will be some directed guidance for us. If you missed it, take a look at lds.org
I was in surgery when the doctors delivered the news to Jenny about the results of Ainsley's bone marrow biopsy. If we go back to the analogy of the weeds in the lawn, after the first 29 days of chemo (induction phase) we should find that the weeds are gone. This is called the "minimal residual disease" or MRD. There are essentially 3 categories you fall into after that: low risk of recurrence (no weeds), standard risk, or high risk (still weeds). Ainsley still has cancer cells in her marrow, and she falls into the high risk category. Not what we wanted to hear. Jenny got the information on her own, and sent it to me in text form. It was an excruciating few hours until the surgery finished before I was able to call Jenny to talk to her. I got to stop by for a few minutes and give Jenny and Ainsley hugs, then it was off again to the hospital. It was about 830pm before I was able to get back to them and start processing what had happened.
What it all means is this: Before, we were swinging with a hammer to cure the Leukemia. Since Ainsley is now in the high risk category, we will now be swinging with a sledge hammer. Higher chance of fevers and medicine side effects, more frequent chemotherapy doses and more frequent trips to the hospital. She'll be getting lumbar punctures 6 of the next 8 weeks and instead of just weekly visits, she'll be adding 4 days a week for 4 of the next 8 weeks. Sledge hammer dropping.
So, it was a hard weekend for Jenny and I. The girls had a great weekend, thankfully. They played with friends, and our friend Cher, stayed overnight with them Friday night. They have not stopped talking about the fun that they had! We are so grateful that through all of this, the kids seem to be able to enjoy life, thank you in large part to the amazing friends, teachers, and primary leaders that are constantly sharing their love and support.
On a much happier note, Ainsley's amazing personality has started to come back as the steroids have exited her system. She is back to laughing and playing. For those that missed it, here is her response to the wonderful Zumba fundraiser held for her by our dear friends in Arizona. Thank you Becca, Zumba Jill, and Prestige Dance Academy. Thank you to all that attended and shook your booties!
Here's a fun picture of her with her American Girl doll, Belle. Notice the matching pajamas, thanks to Grammy. She was laughing with the nurses this weekend as she spent most of it in the hospital. This girl is amazing. She was so funny walking up and down the halls, pushing her dolly in the stroller. She is also amazing at comforting and watching over Hudson. She loves to snuggle him. Lead on Ainsley! We are following your lead and love you to pieces.
It was General Conference from Salt Lake City this weekend and we are eagerly looking forward to watching it. We were in one (or more) hospitals and didn't get to follow it. We know there will be some directed guidance for us. If you missed it, take a look at lds.org
Thursday, April 4, 2013
The Camel
This has been my first week flying solo! No husband, (he went back to work), no Mom or Mom in law. Just me! You will see why I wanted to share this!
My sweet and loving friend, Jaimi sent our family this letter along with a wooden camel. It was so touching to me that I wanted to share it, with her permission of course! Thank you to this most cherished family!
The camel is an interesting animal. It is not one of the most beautiful. It has thick matted hair that falls off in clumps. It has knobby knees and a big hump on its back. It is referred to as a ruminant because it regurgitates its swallowed food to chew again, and then swallows it again. However, the camel is a wonderful pack animal. It is used for transportation in many countries. Camels can carry up to six hundred pounds and average twenty miles a day over rugged terrain. They can travel in hot conditions and go for long periods of time without water. They truly are amazing animals. Regardless of its looks or mannerisms, a camel is loved by its master, for it is useful, obedient, and needed.
Here is the camel’s secret......Each night, at the end of a long day, the camel kneels at the feet of his master. His master carefully lifts the burden from the camel’s back so it can rest comfortably through the night. The next morning, the camel kneels again before His master, and the master gently places the burden on the camel’s back for another day. He is careful to rearrange things here or there if he sees that the pack is wearing a sore spot. This enables the camel to carry his burden for another day.
At Christmas, we celebrate the birth of our Savior, Jesus Christ. Throughout His life, the Savior was referred to as Master. He loves us regardless of our looks or mannerisms. He desires for us to be useful and obedient. May we practice the secret of the camel. As we kneel each night at the feet of our Master, may He lift our burdens that we may rest well and comfortably. As we kneel each morning, may we realize that He knows of our pain, our suffering, and our sorrows, for He has felt them all. May our faith in the Lord Jesus Christ be sufficient to help us carry our burdens...for just one more day.
Rebecca Pulliam, Aberdeen, Idaho
Dear Smedley Family,
The story above along with a camel were given to our family as a Christmas gift a few years ago. The imagery of the Savior, our Master, lifting our burdens as we kneel before Him was so powerful for me that I have chosen to leave the camel out all year long as a constant reminder. May the tremendous burdens placed on you at this time be lightened through the atonement of our Savior Jesus Christ. May your faith in Him and His plan bring you peace and may angels here on earth and from heaven surround you in your time of need. We love you more than we can express. Our thoughts, prayers, and love are always with you.
Jeff, Jaimi, Summer and Gracen
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| This is sitting on my our fireplace mantle, permanently! |
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