Wednesday, April 27, 2011
Saturday, April 23, 2011
more prayers and more prayers!!
I heard from the bone marrow coordinator late on Wednesday evening!! They were able to get in touch with the fourth donor AND the donor can work in our time frame........PROVIDING the donor gets medical clearance. That is where you all come in we need this donor to get medical clearance, we need to get to transplant. We just had her counts done again on Thursday and they are low, but not much lower than they have been running. Her platelets were 20 and now are 18 her hemoglobin was 6.0 and is now 5.7. They do not want to give her any blood products till we get to transplant, so please help us and join in the prayer chain that this donor gets medical clearance!
If the donor gets the clearance, which we won't find out 100% till May 5th, we will be leaving here on May 7th or 8th to be to Minneapolis for the 10th, which will be when she will start work up week. Transplant it self is scheduled for May 27th, and if every thing goes smoothly and according to plan our 100 days will be on Sept 4th (labor day weekend!!) Then hopefully and prayerfully we will be coming home that week!! I want this to all work out, but at the same time I want it all to slow down. I guess that is so weird....I want her to get this transplant be fore she gets any sicker or weaker and yet I have so much to do that I'm afraid I won't be prepared for it. I know I am just crazy. This week will also be the first week that Marshall has been away from us in a whole week! He is going with our church's youth choir to Orlando to serve and sing in a few places there and then three afternoons they will be going to Disney World. I know he'll be just fine, but he is still my oldest baby boy!!
If the donor gets the clearance, which we won't find out 100% till May 5th, we will be leaving here on May 7th or 8th to be to Minneapolis for the 10th, which will be when she will start work up week. Transplant it self is scheduled for May 27th, and if every thing goes smoothly and according to plan our 100 days will be on Sept 4th (labor day weekend!!) Then hopefully and prayerfully we will be coming home that week!! I want this to all work out, but at the same time I want it all to slow down. I guess that is so weird....I want her to get this transplant be fore she gets any sicker or weaker and yet I have so much to do that I'm afraid I won't be prepared for it. I know I am just crazy. This week will also be the first week that Marshall has been away from us in a whole week! He is going with our church's youth choir to Orlando to serve and sing in a few places there and then three afternoons they will be going to Disney World. I know he'll be just fine, but he is still my oldest baby boy!!
Tuesday, April 12, 2011
Prayers please?!
Once again I am asking for prayers!! I just talked to the Bone Marrow donor coordinator at the Uof M. They are on their 4th donor for Amelia. Please pray that this donor is the charm!! I know they say the third one is a charm, but in this case we NEED it to be the fourth. The first two were unavailable and the third one they could not get in touch with, so this is where we are with this. Please pray that the 4th donor is available and can be available for mid May for her transplant! We really need this to work out.
I'm trying to understand God in all of this. I just don't understand why we keep hitting road blocks a long the way. I want to see the positive in this and I want to put all my trust and faith in Him, it's just that I am one who likes to be in control and know what is going on. I'm a planner not a spur of the moment kinda person.
I know that everything happens for a reason and everything happens in God timing and at the time he chooses, I know that and I believe that...it's just trying to let go and let this take place is hard...
Maybe God is testing me? I just want to get there and get this started and get my baby better and get back home so we can move on to be a "normal" family again...as a mom, I am torn in so many directions!!!
Just please continue to pray for her!
Blessings,
I'm trying to understand God in all of this. I just don't understand why we keep hitting road blocks a long the way. I want to see the positive in this and I want to put all my trust and faith in Him, it's just that I am one who likes to be in control and know what is going on. I'm a planner not a spur of the moment kinda person.
I know that everything happens for a reason and everything happens in God timing and at the time he chooses, I know that and I believe that...it's just trying to let go and let this take place is hard...
Maybe God is testing me? I just want to get there and get this started and get my baby better and get back home so we can move on to be a "normal" family again...as a mom, I am torn in so many directions!!!
Just please continue to pray for her!
Blessings,
Monday, April 11, 2011
Procrastination!!!
Not much to report here.
The suit cases are still in the attic and I have about two and a half weeks left before we are scheduled to leave...... I am so NOT ready for this! At least with Marshall's I knew I couldn't leave till Nathan was born and 4 weeks old. Not like I haven't known about leaving for Amelia's transplant for um, like 3 and half months now. Can you say procrastination????? I need to look at a calender and get my butt in gear! So much to do and so much to plan for......
I am needing to rely on others to take care of Marshall while I am half way across the country!! So much to schedule and plan for......My brain is in a constant fog.
Praying that this will pass and I will get things in gear soon!! I'll let ya know if that happens!!!
I'm still waiting to see if the hospital also has their stuff in gear. We will probably go later this week to get our last blood counts from here. Wow that just hit me! last blood count from here.......
Well just wanted to give you the very boring 411 from here. If anything changes I'll let ya know!
Blessings,
The suit cases are still in the attic and I have about two and a half weeks left before we are scheduled to leave...... I am so NOT ready for this! At least with Marshall's I knew I couldn't leave till Nathan was born and 4 weeks old. Not like I haven't known about leaving for Amelia's transplant for um, like 3 and half months now. Can you say procrastination????? I need to look at a calender and get my butt in gear! So much to do and so much to plan for......
I am needing to rely on others to take care of Marshall while I am half way across the country!! So much to schedule and plan for......My brain is in a constant fog.
Praying that this will pass and I will get things in gear soon!! I'll let ya know if that happens!!!
I'm still waiting to see if the hospital also has their stuff in gear. We will probably go later this week to get our last blood counts from here. Wow that just hit me! last blood count from here.......
Well just wanted to give you the very boring 411 from here. If anything changes I'll let ya know!
Blessings,
Wednesday, April 6, 2011
Monday, April 4, 2011
Prayers please....
We have been dealing with a lot here in the last few weeks. Dealing with some real nut cases in there too!!!Some one who is trying to screw with my little girls life, by messing with some other things! Jealous asses need to grow UP!!
We still don't have a date for transplant because the hospital is still in "negations" with the insurance. Don't ask I don't even know if I could explain it correctly....I can try. We received confirmation that yes they did indeed up the transplant cap to $800,000.00. The hospital also received this info, but now they are trying decipher the writing, the hospital said the insurance starts 5 days before transplant and the hospital stops billing under transplant 50 days after transplant and then bills the insurance under major medical. Yes it's crazy I know and it is getting to be very aggravating!! I talked to the donor coordinators last Friday and they said their biggest hold up is that they need a date. They cannot secure a donor till they have a date, not a tentative date a date set in stone. Once they have that date they can call the National Marrow center and have them start the work up on the donor and get things set up for the donor to donate on the transplant date. There is a lot involved in getting this life saving marrow! It is all done on the day of transplant. What will happen is Amelia will have a work up week, which is a full week of nothing but appointments, they will test every major organ in her body to see how they are functioning and to make sure they are up to par and in great working order to with stand the major stress that they will be under and also get a baseline to see where they are functioning at. Once that is done she will be scheduled for her central line placement, then she will check into the hospital on an evening, we will have to report to the hospital and spend the night and then the next morning things begin and we start to count down at -7. Day -7 will be full body radiation...a day that will stick in my head for ever with Marshall! We are not allowed to be in there with them for obvious reasons, they are in there all a lone and we sit out side in a small waiting room with a sign flashing radiation in use.....I remember looking at Tyren and saying there is no turning back now....do you realize what they are doing to our child in there? They were basically killing him. It is a very sinking feeling at that moment in time. I know that there is a bigger picture and that is an aspect of a total picture...but in that moment it's hard to breath. It didn't last very long maybe a half an hour to an hour and we were back in the room.
Then the next few days are chemo days and a few other things, until day -1 that is a day of rest. How they can rest is beyond me when you have just put them through pure hell and they are so sick, with nausea and sores in their mouth and all the way down their throat!! That is why to this day Marshall will very seldom drink carbonated can drinks...they still burn his throat. and you pray that this doesn't happen to your child....
Yep Marshall has major radiation burns!
Day 0 will be transplant day. On that day some where in the world early that morning a person will go into the hospital and have a needle inserted into their hip bone and the marrow drawn out. It will be placed in care in a package to keep it safe and fresh and will be flown to Minneapolis MN and it will arrive at the hospital and be processed and filtered and be ready for you child and it will look like this.....
Then over the next 100 days you sit and watch your child go through so many different phases that you never thought a human body could or even should go through....
If everything goes according to plan you will be out of the hospital in about 4 -5 weeks and going to clinic every day till things are much better and going every other day and so forth and so on. Now I have no experience in that as we were hospitalized for exactly 5 months!! From Sept 11th to February 14th. Then of course once you get out if you get a fever back in you go and that did happen to Marshall just 4 short days from getting out of the hospital. I am praying that this go around for Amelia will be different and we will have a more "normal" transplant! Pray with me for this please?!?!?
Well gotta run, I will try to keep you updated on this insurance stuff. I will try to walk you through every step of this transplant as if you were right there with us!
Thank you in advance for your continued support and prayers they truly mean a lot to all of us...some times it is what carries us through the rough spots!
Blessings,
We still don't have a date for transplant because the hospital is still in "negations" with the insurance. Don't ask I don't even know if I could explain it correctly....I can try. We received confirmation that yes they did indeed up the transplant cap to $800,000.00. The hospital also received this info, but now they are trying decipher the writing, the hospital said the insurance starts 5 days before transplant and the hospital stops billing under transplant 50 days after transplant and then bills the insurance under major medical. Yes it's crazy I know and it is getting to be very aggravating!! I talked to the donor coordinators last Friday and they said their biggest hold up is that they need a date. They cannot secure a donor till they have a date, not a tentative date a date set in stone. Once they have that date they can call the National Marrow center and have them start the work up on the donor and get things set up for the donor to donate on the transplant date. There is a lot involved in getting this life saving marrow! It is all done on the day of transplant. What will happen is Amelia will have a work up week, which is a full week of nothing but appointments, they will test every major organ in her body to see how they are functioning and to make sure they are up to par and in great working order to with stand the major stress that they will be under and also get a baseline to see where they are functioning at. Once that is done she will be scheduled for her central line placement, then she will check into the hospital on an evening, we will have to report to the hospital and spend the night and then the next morning things begin and we start to count down at -7. Day -7 will be full body radiation...a day that will stick in my head for ever with Marshall! We are not allowed to be in there with them for obvious reasons, they are in there all a lone and we sit out side in a small waiting room with a sign flashing radiation in use.....I remember looking at Tyren and saying there is no turning back now....do you realize what they are doing to our child in there? They were basically killing him. It is a very sinking feeling at that moment in time. I know that there is a bigger picture and that is an aspect of a total picture...but in that moment it's hard to breath. It didn't last very long maybe a half an hour to an hour and we were back in the room.
Then the next few days are chemo days and a few other things, until day -1 that is a day of rest. How they can rest is beyond me when you have just put them through pure hell and they are so sick, with nausea and sores in their mouth and all the way down their throat!! That is why to this day Marshall will very seldom drink carbonated can drinks...they still burn his throat. and you pray that this doesn't happen to your child....
Yep Marshall has major radiation burns!
Day 0 will be transplant day. On that day some where in the world early that morning a person will go into the hospital and have a needle inserted into their hip bone and the marrow drawn out. It will be placed in care in a package to keep it safe and fresh and will be flown to Minneapolis MN and it will arrive at the hospital and be processed and filtered and be ready for you child and it will look like this.....
Then over the next 100 days you sit and watch your child go through so many different phases that you never thought a human body could or even should go through....
If everything goes according to plan you will be out of the hospital in about 4 -5 weeks and going to clinic every day till things are much better and going every other day and so forth and so on. Now I have no experience in that as we were hospitalized for exactly 5 months!! From Sept 11th to February 14th. Then of course once you get out if you get a fever back in you go and that did happen to Marshall just 4 short days from getting out of the hospital. I am praying that this go around for Amelia will be different and we will have a more "normal" transplant! Pray with me for this please?!?!?
Well gotta run, I will try to keep you updated on this insurance stuff. I will try to walk you through every step of this transplant as if you were right there with us!
Thank you in advance for your continued support and prayers they truly mean a lot to all of us...some times it is what carries us through the rough spots!
Blessings,
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