November 4, 2014
Gonna be a rough night Nathanael hasn't felt good since we left the hospital and has been very sick not holding anything down. I am sure it is because of the delay in his treatment.
Ugh poor little man: (
November 11, 2014
Treatment
November 12, 2014
Nathanael seemed to be perky today and at times a little too much. I try not to freak out and just let him do his crazy thing. It is hard though I know right now his heart rate gets too high quick with exertion. Getting back to some normal can be overwhelming at times. He has a hard time with all the activity with his brother and sister it stresses him a bit. He expresses his need for everyone to be quiet. I know his counts will be coming down but I am thankful he is doing his best to keep up.
Count check on Thursday...
November 18th, 2014
Just got home! Yeah
Counts are on the rise : )
ANC 2380
HGN 8.4
PLT 108...
The visit with the surgeon went very well.
Nathanael is still having the heart rate elevation when he does just about anything. It will probably get better time but I am glad he his seeing cardiology later this week. We finished up the morning appointments with a doughnut from Krispy Kreme and kids meal from chick fil al. Yep I spoil him a bit. I will pay for it someday and look back and say so worth it!
So Happy Monday!
Counts are on the rise : )
ANC 2380
HGN 8.4
PLT 108...
The visit with the surgeon went very well.
Nathanael is still having the heart rate elevation when he does just about anything. It will probably get better time but I am glad he his seeing cardiology later this week. We finished up the morning appointments with a doughnut from Krispy Kreme and kids meal from chick fil al. Yep I spoil him a bit. I will pay for it someday and look back and say so worth it!
So Happy Monday!
November 28, 2014 Happy Thanksgiving!
The many uses for medical tape! Our use today is: a race track. While we watch Turbo.
Labs came back a little low but once again hemoglobin not low enough to transfuse but it is low. He seems good though. Chemo (Cyclophosphamide
and Etoposide) followed by Pantanamine today. Tomorrow he might have a blood transfusion with chemo since he hemoglobin was 8.1 today.
December 2, 2014
Hgn 9.9
PLT 75
ANC 1430
It's a good day recheck Thursday!
December 5, 2014
ANC 20
HGB 8
PLT 17
He will have both platelets and blood transfusions today! spiked a fever admitted
December 6, 2014
Hospital stay! Fever still coming and going but not as often. Counts are slowly coming up.
ANC 45
PLT 54
HGN 10
No positive cultures at 24 hours we will see what 48 hours does. Nathanael is in good spirits, looks good and doing what he can to have a little fun here and there. Eating isn't great but he is trying. Tonight's movie Wonka's chocolate factory then hopefully a fever free quiet night.
We need his counts to keep coming up and the fever to stay away!
December 20, 2014
Counts are going down but were good today.
ANC 810
HBG 9.8
Plt 149
December 23, 2014
Counts look good but hemoglobin is right on the line at 8.0 he will be getting a transfusion in hope to help him through the next couple of days.
December 25, 2014
We had such a blessed Christmas being home together. I wanted to take a moment to thank our community of Friends, Family, Bible Study, church, CSG systems, Nathanael's Doctors and Nurses, many care organizations and anonymous individuals.
I am humbled by the outpouring of support and help this CHRISTmas. Many of the daily stresses were taken care of allowing us to focus on keeping Nathanael out of the hospital and spending time as a family. I am moved to tears feeling loved by many. You all helped bring Joy and laugher to our house. Watching the kids get excited is contagious and brightens any cruddy mood. Having lost Isaiah in September and having an angel already in Heaven I had wondered how on earth we would emotionally get through this Holiday. It is by the Grace of God and his blessing of our community that it was a joyful Christmas. Sharing Christ with our kids and for them to rejoice at hearing of his birth is the real Joy of the season.
As we move forward in Nathanael's treatment we can see the end of this round. January 6th he starts his last course of 5 day chemotherapy. He will then have one more 3day. The nerves are already starting to build for those end of treatment scans. In July after 6 months of treatments we were all devastated by the tumors that showed up in his lungs.
Bless you all for watching over us and praying when it is needed.
Much Love this Christmas
Ann "Nathanael's Mommy"
January 2, 2014
Blood check went well, he is ready for 5 day chemo next week! His last 5 day then he have one more 3 day and this 24week span of treatment will be over! Scans will follow weeks later and praying for the best!
For now it is a good day : ) I will rejoice!!!
ANC 2220
Hemoglobin 12.1
PLT 195
January 6, 2014
Day 1 of 5 this week Cytotoxin, Etoposide and a dressing change on the menu. Counts look good and besides the early, cold, dark and slick start for today it is going pretty well.
January 7, 2014
Day 2 of 5! In and out! The girls were on it and we were done by noon! Being home makes for a happy boy!
January 8, 2014
Cytotoxin, Etoposide and Pantanimine went really well we were on track to get out at 1pm then we had a hiccup. Nathanael's sodium levels were going down a bit. He only has one kidney so I guess the increased (because of cytotoxin) fluids is causing some fluid retention. By the time we left the infusion center his sodium level was up a bit. We changed a couple things and hoping tomorrow things will be better. We are home, it was a long day yet we didn't have to stay! Yippee
Thank you to the infusion nurses I know you guys feel bad when things don't go as planned. We blame cancer not you! As long as it is to take care of my son whatever it takes even if it is a bit of an inconvenience.
Thank you to the infusion nurses I know you guys feel bad when things don't go as planned. We blame cancer not you! As long as it is to take care of my son whatever it takes even if it is a bit of an inconvenience.
January 9, 2014
Interesting day we will just see where it leads.
He woke up feeling good but overnight pre-hydration (for cytotoxin) fluids left him puffy. At treatment today his wight is up over 2lbs so he has a lot of fluid we have to get rid of. Chemo is almost done then we will deal with the fluid issue. Hardest part he has 1more day of chemo this week. We cannot just stop fluids altogether. We will just wait and see what his little body wants to do! Hopefully it will dump all this extra fluid!
He woke up feeling good but overnight pre-hydration (for cytotoxin) fluids left him puffy. At treatment today his wight is up over 2lbs so he has a lot of fluid we have to get rid of. Chemo is almost done then we will deal with the fluid issue. Hardest part he has 1more day of chemo this week. We cannot just stop fluids altogether. We will just wait and see what his little body wants to do! Hopefully it will dump all this extra fluid!
Day 5 of Nathanael's very last 5 day treatment! We are almost done today, one more 3 day treatment and he is done with Chemo! Then onto scans and hopefully port removal!
It takes a community...
When a family faces a difficult medical situation (for us we have had many) it takes a community of family, friends and even strangers to help them through. Without family living close by even going to appointments are sometimes difficult, then there are treatments that last most the day or the dreaded unexpected hospital stays. Families like mine cannot do this alone.
Na...thanael had completed his 5 day treatment and in order to so that we had help! Thank you for your help this week with the Kurtz Kids Sarah B, Cathy C, Barbara H, Heidi K and Morgan F. Bless you all for stepping in to help get Nathanael through this. You all mean the world to us and thank you to all of you who cover my boy and our family in prayer!
When a family faces a difficult medical situation (for us we have had many) it takes a community of family, friends and even strangers to help them through. Without family living close by even going to appointments are sometimes difficult, then there are treatments that last most the day or the dreaded unexpected hospital stays. Families like mine cannot do this alone.
Na...thanael had completed his 5 day treatment and in order to so that we had help! Thank you for your help this week with the Kurtz Kids Sarah B, Cathy C, Barbara H, Heidi K and Morgan F. Bless you all for stepping in to help get Nathanael through this. You all mean the world to us and thank you to all of you who cover my boy and our family in prayer!
January 11, 2014
Thank you so much to Nathanael's home care nurse Marylyn for coming out this morning and running TPA an unclogging a yucky broviac line. Because of her I was able to spend the day as planned with my daughter who really needed some mommy time. Without his nurse I would have spent the day at the hospital getting his line unplugged.
It is hard in a family when one child has such extreme medical ne...eds. Much is asked of the other children in the family. They need their time to. I do what I can to make each of my children feel special when I can. It is hard to find a balance and in a world of having twins where most things were fair and evenly divided we all have to give a little knowing it isn't gonna always be fair.
It is hard in a family when one child has such extreme medical ne...eds. Much is asked of the other children in the family. They need their time to. I do what I can to make each of my children feel special when I can. It is hard to find a balance and in a world of having twins where most things were fair and evenly divided we all have to give a little knowing it isn't gonna always be fair.
January 13, 2014
Blood counts today done! Hemoglobin is low he needs a transfusion. So here we are in the infusion center. Blood always takes most of the day. Also not a great day to have the littlest Kurtz kid with us. He is just a busy boy not much here to keep him entertained.
Nathanael's ANC & platelets look good not sure on sodium it wasn't back yet.
January 15, 2014
Unplanned clinic visit today. He is/was a bit dehydrated it is a hard balance for me since Nathanael had so much trouble with fluids last week. Retaining water and low sodium, ugh 1st times he has done that. The one kidney thing has us cautious. He is doing a bit of fluid but we are watching it close.
As expected ANC 30 and going down. No transfusions today. Our goal is to keep him out of the hospital if not well whatever it takes to get him through this.
January 17, 2014
Nathanael is running a little low so he is getting blood and platelet transfusions today!
January 20, 2014
Nathanael rocked counts today!
Yippee!
Check again Thursday before his last round of chemo next week woohoo!
January 23, 2014
Nathanael rocked counts again! No transfusions!
He is headed into 3 day chemo next week his LAST planned treatment!
January 27, 2014
Silly boy is ready for chemo! Day 1 of 3day and the final planned treatment! Hopefully his last ever!
Chemo and fluids are hitting hard. I have a puffy boy that isn't feeling well. : (
January 28, 2014
Day 2 of 3 underway...
Rough morning, Nathanael isn't feeling great but he is a champ and doing his best to get through this. It is a Benadryl day he hates that. Hopefully done soon and off to his own bed.
Nathanael had a pretty good night, he is feeling a bit better.
No matter what the future holds this treatment will be done! One more!
He has come from a little boy that bitterly battled every procedure to a little medical expert asking all the questions and telling the nurses how to do things. He is his own advocate! He is an amazing little boy! I am one lucky mom...
January 29, 2014
Nathanael's Last day of planned treatment! as requested "Texas Roadhouse" Take out for his celebration dinner. No he didn't eat it all but he did eat some!
January 30, 2014
What now?
I have had many ask "now that treatment is done what now?"
Just like any other round, in the next few days his counts will drop there will be possible transfusions and he has to fully recover before he gets his last set of scans. That is where we are now. There will be more but we walk step by step and this is no different. This is a huge step in a long journey.
Bless you all for your continued prayers and thank you
January 31, 2014
Downtown and back safely!
Nathanael's counts passed. I was concerned about hemoglobin but he is holding steady at 8.6 not great but passing. Check again monday (after the broncos win the Super Bowl) if he needs a transfusion it could get ...tricky because it is the hospital busy day for that. We will just wait and see it always seems to work out. As far as how he is feeling his spirits are high but the energy is icky.February 3, 2014
Definitely a blood transfusion he is at 6.8 and platelets are good but not great so double transfusion today!
February 5, 2014
Kind of an up/down day. I know based on counts the other day Nathanael's counts have to be low to nothing. His spirits were good he worked hard on some schoolwork yet he eats like a bird ugh. His temp went up a tiny bit but back down right away so I hope it stays down. He doesn't look the greatest but he is holding his own.
Blood check tomorrow and we will just see where he is at.
February 6, 2014
So onto today hmmmm
Should have just had a blood check today but had an unexpected early arrival to the infusion center. No major fever overnight 99/100 infact no fever at all when we got here. The bigger reason is blood Nathanael had a major nosebleed early this morning that would not stop it finally stopped over an hour later when we arrived here. Normally it means low platelets his are not gr...eat but not bad. He will get platelets and we will just see where this day goes. Strange if he would have just did his clinic visit his counts are such that he would have been fine. Darn symptoms
Prayers our little buddy is on the recovery from last chemo and this bloody nose low grade fever is nothing and leads to nothing.
Should have just had a blood check today but had an unexpected early arrival to the infusion center. No major fever overnight 99/100 infact no fever at all when we got here. The bigger reason is blood Nathanael had a major nosebleed early this morning that would not stop it finally stopped over an hour later when we arrived here. Normally it means low platelets his are not gr...eat but not bad. He will get platelets and we will just see where this day goes. Strange if he would have just did his clinic visit his counts are such that he would have been fine. Darn symptoms
Prayers our little buddy is on the recovery from last chemo and this bloody nose low grade fever is nothing and leads to nothing.
February 10, 2014
Labs were great, Nathanael did ok with his dressing change and it was a pretty quick visit today.
Labs again on Friday, not sure on scans yet. They should be next week sometime if Nathanael doesn't get a cold. They are not scheduled yet.
