We had a visit with the Radiation Oncologist on Friday and he was impressed with how Hayden was doing. We reviewed the treatment plan for the treatments and looks like they have us slated for Hayden to have 43 treatments in all so, 3 more treatments than we thought. We are marking off the days on a calender so Hayden can see where we are and where we have come from. I asked about the mouth sores again because they say that they could happen around 3 to 4 wks in. He said let's not talk about that since he's doing so well so...we are pleased MAYBE they will not come and Hayden can soar through his treatments! We also saw the nutritionist and she was quite surprised at his appetite and he weighed in at a whopping 49 lbs!!! I have never seen him weigh that, whoohoo!!! =) She said that there was really no need to see her again unless things changed.
Enough about medical treatments....yesterday we went to the aquarium and and had a great time. Hayden did a lot of walking and did not really seem to tire! Thank you God! We watched the penguins and they were a lot of fun. We left there and walked to Faneuil Hall where we saw some street performers doing various things like dancing or magic tricks. We also saw Ben Franklin walking around and Hayden took a picture with him. We also ate lunch at a place there called Quincy's Market. This place has everything, lots of different vendors serving everything from pizza to seafood.
Well..I will close for now. Keep praying, they are being answered!
Christy
Sunday, March 29, 2009
Thursday, March 26, 2009
Hayden is doing really good. The last few days he seems to be so full of energy and ready to eat!! Our prayers are being answered!!! He keeps us on our toes by saying "let's go, hurry up!" I pray this will only continue..Hayden deserves to have an easier time than he's had in the times past with setbacks. We also had physical therapy yesterday and she was very pleased with the progress in just a weeks time.
Today we went to a place to paint some pottery and we had a great time! After we were done he was ready to move on to the next "fun thing" as he says. We have to reel him back in and say we will have to find something free to do next!! He doesn't think things cost money and he thinks it grows on trees!! But what child doesn't!!
Thanks for continuing to lift us up, we greatly appreciate it!
Oh, by the way, we hear it has been warmer at home. Could you guys send it our way we're still freezing!!!! =)
Talk to ya later,
Christy
Today we went to a place to paint some pottery and we had a great time! After we were done he was ready to move on to the next "fun thing" as he says. We have to reel him back in and say we will have to find something free to do next!! He doesn't think things cost money and he thinks it grows on trees!! But what child doesn't!!
Thanks for continuing to lift us up, we greatly appreciate it!
Oh, by the way, we hear it has been warmer at home. Could you guys send it our way we're still freezing!!!! =)
Talk to ya later,
Christy
Monday, March 23, 2009
31 to go..
Hayden has had a great couple of days. Today he said that the nurse needed to hurry up and come to get him for treatment so he could be done and go back to the apartment! We cracked up at that and we're very glad he felt this way instead of feeling anxious! Thanks for the prayers on this, they have been answered!! He still continues to be hungry and want to eat, Yeah!!!!
The docs still say that in a couple of weeks he would start to have mouth sores and not want to eat by mouth. We are praying that this will not be the case. We still believe that God can change that. He has gained a pound this week!!! So we hope to not take a step forward and 2 back!!
I will post more later!
Our Address here is 1 Emerson Place
Boston, MA 02114
Apt-2P
Christy
The docs still say that in a couple of weeks he would start to have mouth sores and not want to eat by mouth. We are praying that this will not be the case. We still believe that God can change that. He has gained a pound this week!!! So we hope to not take a step forward and 2 back!!
I will post more later!
Our Address here is 1 Emerson Place
Boston, MA 02114
Apt-2P
Christy
Saturday, March 21, 2009
32 to go
Happy Saturday!
We had a great Friday, Hayden had a good day. It was toy day. I'm not sure I have told you but every Friday they get to pick out a toy. They also get to pick the sibling out something from another closet. So..Mason is getting a toy pile of his own!! Hayden has also wanted to eat more so we are very pleased with the appetite stimulant. We are set for treatment next week at 10 AM except for 10:30 on Thursday.
Please continue to pray for us as he continues his treatment. I pray that we have no setbacks from this, I hope that he doesn't get any mouth sores and change his appetite again.
We have had fun getting to know the other families staying in the same apartment complex as we are. Hayden has met some little friends even though he is the oldest. The bad part is that Anna finished her trx last wed. and John will finish his next week. (which we are very happy they are finishing their time here Hayden just won't have play mates) After that we will not have any kids his age as we know right now. There is a family from Haiti coming but that will pose a language barrier and then a couple of 2 year old so....he won't have any friends to play with.
I hope you guys have a great rest of the weekend and I will post more later.
Christy
We had a great Friday, Hayden had a good day. It was toy day. I'm not sure I have told you but every Friday they get to pick out a toy. They also get to pick the sibling out something from another closet. So..Mason is getting a toy pile of his own!! Hayden has also wanted to eat more so we are very pleased with the appetite stimulant. We are set for treatment next week at 10 AM except for 10:30 on Thursday.
Please continue to pray for us as he continues his treatment. I pray that we have no setbacks from this, I hope that he doesn't get any mouth sores and change his appetite again.
We have had fun getting to know the other families staying in the same apartment complex as we are. Hayden has met some little friends even though he is the oldest. The bad part is that Anna finished her trx last wed. and John will finish his next week. (which we are very happy they are finishing their time here Hayden just won't have play mates) After that we will not have any kids his age as we know right now. There is a family from Haiti coming but that will pose a language barrier and then a couple of 2 year old so....he won't have any friends to play with.
I hope you guys have a great rest of the weekend and I will post more later.
Christy
Thursday, March 19, 2009
33 to go!
Hayden has had a good last part of the week. Today especially he seemed less anxious! Thank God! He has not complained of his stomach hurting either. The appetite stimulant also seems to be working, he has had more food by mouth and it hasn't been a struggle!! Yeah!! Thanks for all your prayers God has answered them!!! Please continue to pray that he will not have too many side effects from this and will continue to do well.
We have had some fun this week by going to the Boston Public Library and checking out books. Also, the old part of the library is BEAUTIFUL! I will try to post some pics of it this weekend!
Also a special prayer request about a little boy from Fayetteville, TN that I've been praying for. He has a brain tumor (different diagnosis from us). He is not doing well and from his blog it has spread to other spots! I don't know this family personally but feel a connection because we are bound together by an illness. Pray for healing, pray for strength!
Talk to ya soon,
Christy
We have had some fun this week by going to the Boston Public Library and checking out books. Also, the old part of the library is BEAUTIFUL! I will try to post some pics of it this weekend!
Also a special prayer request about a little boy from Fayetteville, TN that I've been praying for. He has a brain tumor (different diagnosis from us). He is not doing well and from his blog it has spread to other spots! I don't know this family personally but feel a connection because we are bound together by an illness. Pray for healing, pray for strength!
Talk to ya soon,
Christy
Monday, March 16, 2009
36 and counting
Hayden had a good day today. He did not have any nausea or vomiting. Yeah!!! We had a busy day with Proton Therapy this morning then on to see the Ped Oncologist to finally an OT appt. We will have therapy everyday this week at 10:30. Please continue to be in prayer for us.
Also, we have started Hayden on an appetite stimulant so he will hopefully start to feel hungrier and maybe even gain some weight.
I will post again soon! I hope you guys have a good week!
Christy
Also, we have started Hayden on an appetite stimulant so he will hopefully start to feel hungrier and maybe even gain some weight.
I will post again soon! I hope you guys have a good week!
Christy
Friday, March 13, 2009
37 Treatments to go
Happy Friday to all!
Well today has gone ok but started off a little rocky. We had a pretty decent night last night but this morning he woke up vomiting. He did this several times. We were able to still receive treatment. I'm not sure really what to make of it. It is really early to have the radiation do this to him but I guess it could. We are going to see the oncology doc on Monday after trx. She wants to make sure we do not lose ground with Hayden's nutrition. Please pray for his appetite to increase and less vomiting. Hayden can not afford to lose any weight! I feel some of this may be brought on by nerves which is to be expected. I'm hoping once we get into the groove of things we will have smooth sailing.
We appreciate every prayer and every kind word spoken. This has been a long journey and at times we are so weary that you don't think you can go another step. I am so thankful God knows and is there with open arms to pick us up. I have often asked God why us; but why not us. We have through all of this seen God's hand so many times. His hand of mercy, His hand of love. I believe he sometimes has to break us in order to mold the very being he intended us to be. I have certainly grown through all of this. For those of you who know me well, really well (like family) be patient with me because God isn't finished yet! And...I don't think He's finished performing the miracles in Hayden's life either!!! The best is yet to come when Hayden can just be a little boy again. I truly believe it!
Please be in prayer for our niece and nephew(Brian and Kim) they lost their mom this week. Our hearts are saddened and it is hard because we could not be there with them through this...
Love ya,
Christy
Well today has gone ok but started off a little rocky. We had a pretty decent night last night but this morning he woke up vomiting. He did this several times. We were able to still receive treatment. I'm not sure really what to make of it. It is really early to have the radiation do this to him but I guess it could. We are going to see the oncology doc on Monday after trx. She wants to make sure we do not lose ground with Hayden's nutrition. Please pray for his appetite to increase and less vomiting. Hayden can not afford to lose any weight! I feel some of this may be brought on by nerves which is to be expected. I'm hoping once we get into the groove of things we will have smooth sailing.
We appreciate every prayer and every kind word spoken. This has been a long journey and at times we are so weary that you don't think you can go another step. I am so thankful God knows and is there with open arms to pick us up. I have often asked God why us; but why not us. We have through all of this seen God's hand so many times. His hand of mercy, His hand of love. I believe he sometimes has to break us in order to mold the very being he intended us to be. I have certainly grown through all of this. For those of you who know me well, really well (like family) be patient with me because God isn't finished yet! And...I don't think He's finished performing the miracles in Hayden's life either!!! The best is yet to come when Hayden can just be a little boy again. I truly believe it!
Please be in prayer for our niece and nephew(Brian and Kim) they lost their mom this week. Our hearts are saddened and it is hard because we could not be there with them through this...
Love ya,
Christy
Thursday, March 12, 2009
38 Treatments to go
Day 2 went ok. Hayden was a little scared still today,but he did fine. He does not want to have the sedation. It makes him feel dizzy at first before he goes under and that makes him upset. I feel helpless, I try to comfort and tell him how great he's doing and to not be afraid. But...I'm afraid too. I only hope I'm convincing enough for him to help him feel safe.
Last night after I posted Hayden did get sick and so we called the Dr. to let her know, she told us to try to get some more fluids in for the day. Nutrition would take a back seat to fluids. We got some in and then at midnight he said I'm hungry and wanted McDonalds. So, needless to say David went out and got it. He ate 9 nuggets and some fries. We were very glad he ate even though it was a late night! Hey what's sleep anyways..It's overrated!! Ha!
Well one more treatment for this week and we will be off for the weekend. Yeah! Oh by the way they have brought on board a medication that helps with nausea and vomiting, so we will use this everyday.
Please keep praying for us!
My sister Brooke is flying out tomorrow to stay the week with us. Please pray for her safe journey.
Christy
Last night after I posted Hayden did get sick and so we called the Dr. to let her know, she told us to try to get some more fluids in for the day. Nutrition would take a back seat to fluids. We got some in and then at midnight he said I'm hungry and wanted McDonalds. So, needless to say David went out and got it. He ate 9 nuggets and some fries. We were very glad he ate even though it was a late night! Hey what's sleep anyways..It's overrated!! Ha!
Well one more treatment for this week and we will be off for the weekend. Yeah! Oh by the way they have brought on board a medication that helps with nausea and vomiting, so we will use this everyday.
Please keep praying for us!
My sister Brooke is flying out tomorrow to stay the week with us. Please pray for her safe journey.
Christy
Wednesday, March 11, 2009
Treament Today
Hello all,
Hayden had his first radiation treatment today. He did well, but the rest of the afternoon he has not wanted to eat or really do anything. I hope that this is not a sign of things to come. We have just fed him through his G-tube.
We will continue on starting tomorrow at 11:00 and then 10:30 on Friday. We will find out our schedule for the next week on Friday. This morning Hayden was a little nervous but after he woke up he asked what exactly did they do? I told him they gave him his therapy and he said that it was not too bad..We are very thankful that he feels this way and only hope that he will continue to. We spoke with Dr. regarding the scans that we've had done and he told us that what was left of the tumor are the portions where it originated. He said that there was not reason to do anymore surgery because it would be like "cherry picking"because it is in several areas. So we are thankful that we can begin.
As I got up this morning for my quiet time, of course I was anxious, and I read my devotional so I would like to share it with you.....The first words were "Walk by faith, and not by sight. As you take steps faith, depending on Me, I will show you how much I can do for you. If you live your life to safely. you will never know the thrill of seeing me work through you. When I gave you My Spirit, I empowered you to live beyond your natural ability and strength. That is why it is wrong to measure your energy level against the challenges ahead of you. The issue is not your strength but Mine, which is limitless. By walking close to me, you can accomplish My purposes in My strength." 2 Corinthians 5:7 Wow, what can I say I needed that. Even though it is not easy I will walk by faith because He has not let me down.....
Love to all,
Christy
Hayden had his first radiation treatment today. He did well, but the rest of the afternoon he has not wanted to eat or really do anything. I hope that this is not a sign of things to come. We have just fed him through his G-tube.
We will continue on starting tomorrow at 11:00 and then 10:30 on Friday. We will find out our schedule for the next week on Friday. This morning Hayden was a little nervous but after he woke up he asked what exactly did they do? I told him they gave him his therapy and he said that it was not too bad..We are very thankful that he feels this way and only hope that he will continue to. We spoke with Dr. regarding the scans that we've had done and he told us that what was left of the tumor are the portions where it originated. He said that there was not reason to do anymore surgery because it would be like "cherry picking"because it is in several areas. So we are thankful that we can begin.
As I got up this morning for my quiet time, of course I was anxious, and I read my devotional so I would like to share it with you.....The first words were "Walk by faith, and not by sight. As you take steps faith, depending on Me, I will show you how much I can do for you. If you live your life to safely. you will never know the thrill of seeing me work through you. When I gave you My Spirit, I empowered you to live beyond your natural ability and strength. That is why it is wrong to measure your energy level against the challenges ahead of you. The issue is not your strength but Mine, which is limitless. By walking close to me, you can accomplish My purposes in My strength." 2 Corinthians 5:7 Wow, what can I say I needed that. Even though it is not easy I will walk by faith because He has not let me down.....
Love to all,
Christy
Saturday, March 7, 2009
Happy Saturday
Good Morning,
I am sorry that I have not posted for a couple of days. We spoke to the nurse with the Proton Center yesterday and we are on target to begin therapy next Wed at 10:30. We have still not spoken directly with Dr. regarding the scans but everything looks like we are on track for beginning. We feel God has answered so many prayers that have gone up not just from our family but so many of you. I feel so good right now(although I still want to hear more information from the Dr.) I feel that we are finally in a place where we are seeing the light at the end of this long tunnel. I have over the last mos have felt more anxiety than I have ever felt in my life. I know that I am weak and only through God I am strong! I have felt attacked by the devil for so long but I know that he delights in trying to steal your faith. I am delighted that God has never left my side even when I try to make it on my own.
We will post more as we know it, but things look great! I pray now that we will go through this radiation and Hayden continues to get stronger and stronger.
Love to you guys,
Christy
I am sorry that I have not posted for a couple of days. We spoke to the nurse with the Proton Center yesterday and we are on target to begin therapy next Wed at 10:30. We have still not spoken directly with Dr. regarding the scans but everything looks like we are on track for beginning. We feel God has answered so many prayers that have gone up not just from our family but so many of you. I feel so good right now(although I still want to hear more information from the Dr.) I feel that we are finally in a place where we are seeing the light at the end of this long tunnel. I have over the last mos have felt more anxiety than I have ever felt in my life. I know that I am weak and only through God I am strong! I have felt attacked by the devil for so long but I know that he delights in trying to steal your faith. I am delighted that God has never left my side even when I try to make it on my own.
We will post more as we know it, but things look great! I pray now that we will go through this radiation and Hayden continues to get stronger and stronger.
Love to you guys,
Christy
Wednesday, March 4, 2009
MRI went well
Hi all,
Everything went well with the MRI today and all we know is that Dr. Liebsch said that he thought that pictures went well and there were no surprises. He did not elaborate on that but we are going to trust that that was good news. I know you guys are continuing to pray for us...Thank you! We are missing Mason so much too so please pray for us to be able to start therapy so we can all be together again!
Love you guys,
Christy
Everything went well with the MRI today and all we know is that Dr. Liebsch said that he thought that pictures went well and there were no surprises. He did not elaborate on that but we are going to trust that that was good news. I know you guys are continuing to pray for us...Thank you! We are missing Mason so much too so please pray for us to be able to start therapy so we can all be together again!
Love you guys,
Christy
Tuesday, March 3, 2009
MRI Tommorow
Hey to everyone,
Just a quick update, we will have a MRI tomm. We Have to be there at 1:15 and they will start at 2:15. Please be in prayer for Hayden, around noon tomm we have to put this numbing cream over his Porta-Cath. This is the first time they will access the Porta-cath. So..I hope Hayden does ok and is not to afraid of this. They do have to puncture the skin with the needle but Hayden is a thin child so he just has a small layer of tissue to go through. When they begin radiation therapy they will access this Port on Monday and put a bandage over the needle every day until Friday. At that time they will take it out over the weekend. He will not be able to get this wet through the week so...needless to say bathing will be a challenge.
The rest of the week will be appt on Thursday for a place to stay where they will have other families here for treatment. This will be an apartment so we will have a kitchen to cook in, Yeah!! On Friday we will meet with a Nutritionist and OT for there help.
I will post tomm after we get home from MRI. Hayden is doing well. He does however think that anytime we go somewhere that he needs a toy!! We are having to say NO which is hard.
Praying for healing,
Christy
PS -Yes , we got snow and Hayden was very excited!!
Just a quick update, we will have a MRI tomm. We Have to be there at 1:15 and they will start at 2:15. Please be in prayer for Hayden, around noon tomm we have to put this numbing cream over his Porta-Cath. This is the first time they will access the Porta-cath. So..I hope Hayden does ok and is not to afraid of this. They do have to puncture the skin with the needle but Hayden is a thin child so he just has a small layer of tissue to go through. When they begin radiation therapy they will access this Port on Monday and put a bandage over the needle every day until Friday. At that time they will take it out over the weekend. He will not be able to get this wet through the week so...needless to say bathing will be a challenge.
The rest of the week will be appt on Thursday for a place to stay where they will have other families here for treatment. This will be an apartment so we will have a kitchen to cook in, Yeah!! On Friday we will meet with a Nutritionist and OT for there help.
I will post tomm after we get home from MRI. Hayden is doing well. He does however think that anytime we go somewhere that he needs a toy!! We are having to say NO which is hard.
Praying for healing,
Christy
PS -Yes , we got snow and Hayden was very excited!!
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