We had a great time on Saturday. JD ate like 6 donuts, 2 cookies and a bunch of chips but he was really well behaved and entertained!
We had a great turn out. Thank you to everyone that came and to those that got registered. The amount of support and love we had was tremendous! We had 91 people registered and several that were unable to register for various reasons. So thank you all!
I want to thank my family and friends that helped run the drive...you guys did a great job! It was such a great day...so full of love and hope. I really needed this day. To be surronded by my family, friends, strangers and people I had not seen in a long time, was just incredible. I was moved and left feeling like I was on cloud nine.
Again thank you to EVERYONE involved in this!!!
We had our gastro appt today and she said just to continue doing what we are doing. Z will follow up with Dr. Liz in a month.
I think I hear Z upstairs so I have to run but will update as we get more news.
Monday, January 28, 2008
Friday, January 25, 2008
The good and the hmmm
First of all Zachary came out fine from the Broviac line surgery. It took them a bit longer to find the vein for him but the did it on his left side. The line only has one port b/c he is a bit too small for the bigger line that supports 2 ports. This line will be used to draw blood and administer any meds including chemo if needed.
When I got back to recovery he was running a fever of 102 and was VERY pink and his heart rate was 218. I almost lost it right there. We had 3 incredible nurses that were fighting over holding him. He was very charming when we arrived and one over some more fans. We eventually got the fever down and the heart rate down and my sweet boy looked very normal again.
Today the visiting nurse came and Z always puts on a show for her. LOL He was very happy to see her. The good news...Zachary is now at 9lbs!!!!!
The "hmmm" part of today...
His WBC count was 14.9...it is creeping up. I know that this is not the only thing we are watching but it is the one thing I can understand so that one number can make or break my week...as can his weight.
She gave me some other numbers too:
Hemoglobin was 9.3
Platelets were 432
ANC (?) 2235
Monocytes 15...this is another # Dr. Rob is watching.
I got a card from a friend of mine. It was a sweet card and she told me how when her son was battling cancer he saw Dr. Bob. She told me how much she loved everyone in the office. I knew we were in good hands. The nurse told me that Dr. Bob was a pediatrician first. So he has LOTS of experience. I really love his staff.
On Monday we see the gastro doctor. I just want to make sure that Z's meds are acurate for his weight. Thursday we get more bloodwork and another weigh-in. Then Friday is his well baby check up (2 months!) but he will not get any vaccines. Then the following week his bloodwork will be done in the office so Dr. Rob or Bob can see him.
He is filling out his 0-3 month clothes now! I love to see clothes to small on him!
Tomorrow is the bone marrow drive. Wish us luck!!!
When I got back to recovery he was running a fever of 102 and was VERY pink and his heart rate was 218. I almost lost it right there. We had 3 incredible nurses that were fighting over holding him. He was very charming when we arrived and one over some more fans. We eventually got the fever down and the heart rate down and my sweet boy looked very normal again.
Today the visiting nurse came and Z always puts on a show for her. LOL He was very happy to see her. The good news...Zachary is now at 9lbs!!!!!
The "hmmm" part of today...
His WBC count was 14.9...it is creeping up. I know that this is not the only thing we are watching but it is the one thing I can understand so that one number can make or break my week...as can his weight.
She gave me some other numbers too:
Hemoglobin was 9.3
Platelets were 432
ANC (?) 2235
Monocytes 15...this is another # Dr. Rob is watching.
I got a card from a friend of mine. It was a sweet card and she told me how when her son was battling cancer he saw Dr. Bob. She told me how much she loved everyone in the office. I knew we were in good hands. The nurse told me that Dr. Bob was a pediatrician first. So he has LOTS of experience. I really love his staff.
On Monday we see the gastro doctor. I just want to make sure that Z's meds are acurate for his weight. Thursday we get more bloodwork and another weigh-in. Then Friday is his well baby check up (2 months!) but he will not get any vaccines. Then the following week his bloodwork will be done in the office so Dr. Rob or Bob can see him.
He is filling out his 0-3 month clothes now! I love to see clothes to small on him!
Tomorrow is the bone marrow drive. Wish us luck!!!
Monday, January 21, 2008
We're growing...
Zachary is now at 8lbs and 11oz! He gained 4 oz since Friday. I can not believe it! He has some feedings where he struggles but all in all, he is doing so good!
They said his red blood count looks good and todays white cell count was at 13.2. So, he is holding steady in the 13K range. What does this mean? It means I am still optimistic about a miracle but very well aware that it may just be the chemo helping him keep it down. Who knows and only time will tell!
I finally checked in online to a JMML support group. I got 2 very nice messages and it sounds like Z's story is very similar to a few of the other kids. I am eager to join in with these folks but am just still so very overwhelmed.
Here is a picture for Grandpa Keeven. I hope you find a way to look at it online, but I will be
mailing you a copy very soon!
Saturday, January 19, 2008
Do you see something different?
NO MORE FEEDING TUBE!
That's right, it's gone! The home health nurse came out on Friday and Z weighs 8lbs and 7oz! So he gained 3oz's since Tuesday! We determined he is really only puking up about 10-15% of his feedings. So Dr. Bob said that we can try it w/o the tube. Good thing b/c the night before Z had pulled the tube out himself. What a stinker! His white cell count is at 13.1k (up from 12.6 on Tuesday) but the little man is holding his own. Red counts look fine. He has more blood work done on Monday and will hopefully receive an RSV vaccination. Tish (the nurse) feels he qualifies for it but they have to run it by the insurance company. What it does is it will boost his immune system for 30 days and help him fight off any colds that come our way...or in our case that have NEVER left! He will get a shot every 30 days until the spring. Lets' hope he is a candidate for this!
He is eating well and a bit faster. If his tummy is full of gas or he has to poop he won't eat until all that is done. He gets a little dramatic. ha ha ha!
We go on Thursday for him to have a new line put in. His central line is clogging at the end and making blood draws harder. He will be under general anesthesia and we will be at the hospital most of the day.
Jonathan is so in love with is brother. I swear Z is going to sock him in the eye one day if he doesn't stay out of his face. I know it is out of love but the boy won't leave him alone. Brotherly love huh?
Today is a good day. Now we are just taking it day by day. I have not given up on a miracle and hoping to wake up and this all be a bad dream but I also know that we have a long way to go if this truly is JMML. It is just all so confusing and for now I am thankful for the way Z is improving. He is smiling a lot more and awake a good part of the day. Now if I can capture that smile on camera.
Thursday, January 17, 2008
Wednesday, January 16, 2008
8 Weeks
Zachary is 8 weeks old today!
We had our appt yesterday at St. Louis Children's hospital. It was a bit overwhelming. Because his white blood count went down from 24k to 13k they want to do more testing/research on Z to confirm that it is still the JMML. I am still hoping for a miracle but at the same time remaining realistic.
They sent blood form Z, me and Jason off to a research lab at the University of CA in San Francisco. They do research on JMML. They are going to see how his cells grow, what chromosomal abnormalities he has and if Jason and I have any. This will take about 2 weeks. The results from this and depending on what his white blood counts do will determine what approach we take with this. So yes, more waiting!
He did have bloodwork done yesterday and it all came back great. White cells were down again to 12.6. Is this a miracle? I want to think so, so keep praying!
Z is not doing well eating at all and his cough is coming back. A friend told me to talk to the docs about his dose of pepcid. He has gained weight since he was on it so he may need a bigger dose. Or he could have the stomach bug that JD had. Who knows. It is all trial and error.
Here is a new video of Z:
My sister set up a local bone marrow drive on the 26th at her church. Like I said, we are one lucky family to have so much love and support.
Jonathan is doing well. He told me that the doctor was going to take the sick out of Zachary and make him all better. He wants Zachary to get big and strong so they can build puzzles together!
We had our appt yesterday at St. Louis Children's hospital. It was a bit overwhelming. Because his white blood count went down from 24k to 13k they want to do more testing/research on Z to confirm that it is still the JMML. I am still hoping for a miracle but at the same time remaining realistic.
They sent blood form Z, me and Jason off to a research lab at the University of CA in San Francisco. They do research on JMML. They are going to see how his cells grow, what chromosomal abnormalities he has and if Jason and I have any. This will take about 2 weeks. The results from this and depending on what his white blood counts do will determine what approach we take with this. So yes, more waiting!
He did have bloodwork done yesterday and it all came back great. White cells were down again to 12.6. Is this a miracle? I want to think so, so keep praying!
Z is not doing well eating at all and his cough is coming back. A friend told me to talk to the docs about his dose of pepcid. He has gained weight since he was on it so he may need a bigger dose. Or he could have the stomach bug that JD had. Who knows. It is all trial and error.
Here is a new video of Z:
My sister set up a local bone marrow drive on the 26th at her church. Like I said, we are one lucky family to have so much love and support.
Jonathan is doing well. He told me that the doctor was going to take the sick out of Zachary and make him all better. He wants Zachary to get big and strong so they can build puzzles together!
Angels
They say angels come in all different forms and that you may come face to face with them here on Earth and not realize it. They also may be people you never met before. That is how it is in my case. Granted, I "know" my angels but I never met them. Let me explain...
About 5 years ago I some how stumbled across ivillage.com's trying to conceive message board. I signed up and soon had talked to many wonderful ladies all with the same goal...trying to get pregnant! We shared many tears and many laughs. We supported each other unconditionally. After 2 years and some fertility stuff I got pregnant. I moved on to the Pregnant board with many of my friends. Then I had Jonathan and again moved to a "grad" board. These ladies and I formed bonds and talked online, via email and some over the phone. We mailed each other cards and I met a few of them as well. They are incredible and when I told people about my "board friends" they would give me funny looks. No one understood our bond. They helped me so much this past year. They were there for me praying for Mom when she got sick, for Dad when he was hospitalized and for all of us when Mom passed away. Yes I have a ton of support from my friends and family but this was my extended set of friends and you can never have too much love and support.
When Z was in the PICU, one of the girls that is local came to see us with a care package from a few of the other girls. It was amazing, generous, unexpected and a great distraction. Thank you ladies!!!! And congrats to Jenny on the birth of Elizabeth Colleen!!!
Yesterday we had a confusing and exhausting day at Children's hospital. I came home to a wonderful surprise. More of the ladies set up a collection and sent us a very generous check and 2 beautiful cards! I was overwhelmed. I cried and just could not believe how blessed I was to have such incredible friends. I want you each to know that we are so grateful for your support, prayers and love. Thank you so very very much!
We may be in a tough spot right now, but there are so many people that are helping us in so many different ways. If you are reading this, please know that we appreciate you and thank you so very much. Without all of you, I don't know if I'd make it through this.
Thank you!
About 5 years ago I some how stumbled across ivillage.com's trying to conceive message board. I signed up and soon had talked to many wonderful ladies all with the same goal...trying to get pregnant! We shared many tears and many laughs. We supported each other unconditionally. After 2 years and some fertility stuff I got pregnant. I moved on to the Pregnant board with many of my friends. Then I had Jonathan and again moved to a "grad" board. These ladies and I formed bonds and talked online, via email and some over the phone. We mailed each other cards and I met a few of them as well. They are incredible and when I told people about my "board friends" they would give me funny looks. No one understood our bond. They helped me so much this past year. They were there for me praying for Mom when she got sick, for Dad when he was hospitalized and for all of us when Mom passed away. Yes I have a ton of support from my friends and family but this was my extended set of friends and you can never have too much love and support.
When Z was in the PICU, one of the girls that is local came to see us with a care package from a few of the other girls. It was amazing, generous, unexpected and a great distraction. Thank you ladies!!!! And congrats to Jenny on the birth of Elizabeth Colleen!!!
Yesterday we had a confusing and exhausting day at Children's hospital. I came home to a wonderful surprise. More of the ladies set up a collection and sent us a very generous check and 2 beautiful cards! I was overwhelmed. I cried and just could not believe how blessed I was to have such incredible friends. I want you each to know that we are so grateful for your support, prayers and love. Thank you so very very much!
We may be in a tough spot right now, but there are so many people that are helping us in so many different ways. If you are reading this, please know that we appreciate you and thank you so very much. Without all of you, I don't know if I'd make it through this.
Thank you!
Monday, January 14, 2008
Good news
Z had an appt w/the oncologist today. We got there and had to wait and Z at 3 ounces by bottle. The waiting room there is set up for folks to be there for several hours (for transfusions and such) and they have lots of stuff for kids and adults.
They changed the dressing on his line and were able to get blood from it! Because of that, we are looking at doing his new line on the 26th unless it clogs up then we will do it sooner. Z was in such a good mood, he smiled and cooed and won over a few more people. His red cell count was great and the white cell count went down! It was down from 24k to 13k! Dr. Rob said it may be still from his last chemo. I am trying not to get too excited and read too much into and just take it as a great sign that he doesn't get chemo today! The nurse will check his blood on Thurs or Friday and that will determine if we do chemo again and when.
Tomorrow we go down to Childrens and start the process for a match!
Anyway, today was a good day and we will take all of those we can!
They changed the dressing on his line and were able to get blood from it! Because of that, we are looking at doing his new line on the 26th unless it clogs up then we will do it sooner. Z was in such a good mood, he smiled and cooed and won over a few more people. His red cell count was great and the white cell count went down! It was down from 24k to 13k! Dr. Rob said it may be still from his last chemo. I am trying not to get too excited and read too much into and just take it as a great sign that he doesn't get chemo today! The nurse will check his blood on Thurs or Friday and that will determine if we do chemo again and when.
Tomorrow we go down to Childrens and start the process for a match!
Anyway, today was a good day and we will take all of those we can!
Saturday, January 12, 2008
Not the news we wanted
I spoke with Dr. Rob this morning and while Zachary's red cell count and platlets were great, his white cell count was up to 24 thousand. Not so great. He said this in deed confirms his diagnosis of JMML. We go in on Monday for his first chemo shot. Because we are not using the chemo to treat the lukemia, just to keep the white cells down, it is a bit tricky. He wants to do daily shots and see how his WBC responds to that. We are hoping that the home health nurse can come and do his injections rather than me taking him to the office once a day. We will talk on Monday about a game plan.
He also needs to have his central line removed as it is clogging at the ends and it was just a temporary line and not meant to last this long. So we will schedule a procedure that entails putting in another line that is futher down and the skin. He will be under general anesthesia and we will be there for a few hours. I'll let you know when we do that.
I forgot to mention here that my OB authorized me off for 4 more weeks and my work approved it. I am beyond thrilled. I can't imagine having to do all this while working and leaving his care to someone else. I know I have family and friends that could handle it but it is a just a huge responsibility and I would hate to put that on someone. I hate checking the placement of his feeding tube and flushing his central line. He's a baby and shouldn't have to go through this.
On a good note, he did eat 2 of 4 feedings all on his own! Aunt Sandy had the special touch and got him to eat 3 oz on his own! Yippee!! At this stage, we are taking it one day at a time and rejoicing in small things. What else can you do?
He also needs to have his central line removed as it is clogging at the ends and it was just a temporary line and not meant to last this long. So we will schedule a procedure that entails putting in another line that is futher down and the skin. He will be under general anesthesia and we will be there for a few hours. I'll let you know when we do that.
I forgot to mention here that my OB authorized me off for 4 more weeks and my work approved it. I am beyond thrilled. I can't imagine having to do all this while working and leaving his care to someone else. I know I have family and friends that could handle it but it is a just a huge responsibility and I would hate to put that on someone. I hate checking the placement of his feeding tube and flushing his central line. He's a baby and shouldn't have to go through this.
On a good note, he did eat 2 of 4 feedings all on his own! Aunt Sandy had the special touch and got him to eat 3 oz on his own! Yippee!! At this stage, we are taking it one day at a time and rejoicing in small things. What else can you do?
Delayed update
Sorry for the delay in updates. We are trying to settle in with the new routine and adjust to meeting all of Zachary's needs. We have to flush his central line 3 times a day, remember all his meds (well there are only 2), schedule appts and feed him. He is still eating 2 oz by mouth and 1 oz by pump. It takes a good 1.5 hours too feed him and during the day he is suppose to eat every 3 hrs from 6am to 9pm. It is exhausting.
The hardest part for us is getting him to eat from the bottle. We have tried like 5 different bottle/nipple combos. He just kind of opens and closes his mouth and can't get a grip on the nipple. He has done this since birth. It is pretty much hit or miss. If anyone has any tips on teaching him to latch on to the nipple, please email me. We are exhausted and I just want little man to eat! He also seems to be a bit uncomfortable with gas. We are giving him the mylicon drops too.
Yesterday we had our first appt at the hematolgist/oncologist office. It was at 1:30 and we were there until 4pm! YIKES! Dr. Rob and Dr. Bob (I love that) are really sweet, caring and helpful. They all love Zachary and are just truly wonderful people. They checked him out and he is doing fine. They had some problems with getting blood from his central line and had to put some meds in it. In the end they got blood from his arm. He was already whining/crying from being hungry but did not cry any harder when he got stuck! I was ready to but he did fine so I bit my tongue and didn't cry. He also pulled his feeding tube out and they had to reinsert it. The routine is that they will draw blood and depending on what his red blood cell counts do, will determine if he gets another transfusion. If they are low then he will get one. If his white count is high, and continues to rise, then he goes in for more chemo.
There is so much to digest. We got our call from St. Louis Children's Hospital and we meet them on Tuesday. We meet w/our transplant coordinator and the transplant doctor. We are signing consents to start the search. They will start looking at donated cord blood first since Z is so little. Then they move on to registered donors. Now, many have asked about getting tested and I love you all for that. However, Dr. Rob told us that the likelihood of someone matching is 1 in a million and it can be expensive. My niece Sarah went to www.marrow.org and under events you can check for drives in your area. If you get tested via a drive it is a lot less expensive. The one here is $52. I do not expect anyone to do this but since so many asked, I am just making the information available. If you get tested then you are entered in to the national registry. I am not sure if you can be tested just for Zachary, we are looking in to this. But even if you do get on the nation registry you don't have to donate if you are a match.
When we do find a donor, they will have a physical done and more testing to confirm they are a true match. Then my insurance company pays for them to go to the nearest center (it may be local or they may have to fly them somewhere) and the donor should not have any out of pocket expenses. They will also check Englands registry too.
Again, thank you all so very much for your support. I do not want anyone to feel obligated to be tested. I know it is costly. I am just hoping and praying that we can find a match at the cord bank here b/c then we can move forward super quick! That would be the ideal route for us.
Have a great day!
The hardest part for us is getting him to eat from the bottle. We have tried like 5 different bottle/nipple combos. He just kind of opens and closes his mouth and can't get a grip on the nipple. He has done this since birth. It is pretty much hit or miss. If anyone has any tips on teaching him to latch on to the nipple, please email me. We are exhausted and I just want little man to eat! He also seems to be a bit uncomfortable with gas. We are giving him the mylicon drops too.
Yesterday we had our first appt at the hematolgist/oncologist office. It was at 1:30 and we were there until 4pm! YIKES! Dr. Rob and Dr. Bob (I love that) are really sweet, caring and helpful. They all love Zachary and are just truly wonderful people. They checked him out and he is doing fine. They had some problems with getting blood from his central line and had to put some meds in it. In the end they got blood from his arm. He was already whining/crying from being hungry but did not cry any harder when he got stuck! I was ready to but he did fine so I bit my tongue and didn't cry. He also pulled his feeding tube out and they had to reinsert it. The routine is that they will draw blood and depending on what his red blood cell counts do, will determine if he gets another transfusion. If they are low then he will get one. If his white count is high, and continues to rise, then he goes in for more chemo.
There is so much to digest. We got our call from St. Louis Children's Hospital and we meet them on Tuesday. We meet w/our transplant coordinator and the transplant doctor. We are signing consents to start the search. They will start looking at donated cord blood first since Z is so little. Then they move on to registered donors. Now, many have asked about getting tested and I love you all for that. However, Dr. Rob told us that the likelihood of someone matching is 1 in a million and it can be expensive. My niece Sarah went to www.marrow.org and under events you can check for drives in your area. If you get tested via a drive it is a lot less expensive. The one here is $52. I do not expect anyone to do this but since so many asked, I am just making the information available. If you get tested then you are entered in to the national registry. I am not sure if you can be tested just for Zachary, we are looking in to this. But even if you do get on the nation registry you don't have to donate if you are a match.
When we do find a donor, they will have a physical done and more testing to confirm they are a true match. Then my insurance company pays for them to go to the nearest center (it may be local or they may have to fly them somewhere) and the donor should not have any out of pocket expenses. They will also check Englands registry too.
Again, thank you all so very much for your support. I do not want anyone to feel obligated to be tested. I know it is costly. I am just hoping and praying that we can find a match at the cord bank here b/c then we can move forward super quick! That would be the ideal route for us.
Have a great day!
Thursday, January 10, 2008
WE ARE HOME!
We were finally released last night. We had a visit with a home health nurse and she trained us on the feeding tube and putting heparin in his central lines. Wow!
Zachary is doing well and Jason and I are in the process of decluttering the house and organizing his stuff. Gotta take the Christmas tree down still!
Unfortunately, none of us were a match for Z. His WBC are up again from 10k to 17k. He got a blood transfusion on Wednesday before leaving because the chemo caused his red cells and iron to go down a bit. He was up to 8lbs and 5oz when we left!
We go see the hematologist tomorrow. He will do another WBC. We are waiting on a call from Children's hospital about the bone marrow transplant.
I want to thank everyone for their prayers. I also want to thank everyone that brought us food, visited us, called and emailed. You all are such a wonderful support system for us and I have no idea how we'd manage without you all so thank you!!!! I know there are many emails and calls that I haven't returned and I do apologize. We are just trying to settle in w/all this new stuff we have to do and keep Jonathan on his normal routine. I need to thank my friend Julie for sending Zachary a hat for his birth! Julie we love it! I will post pictures of him in it soon. You are so sweet. Our friend Kristin made the hat too. I'll have to post her website cus she does great work!
Jason's parents arrive on Friday and I am so thankful. He is returning to work on Monday and I have to admit, he has been handling a lot of the tube stuff b/c I am too nervous. I guess I have to step up to the plate and do my part. I nearly fainted at the hospital when they showed us how to insert the feeding tube. I can't even watch them change the dressing on his central line!
Anyway, I know I am forgetting stuff so please forgive me. We are closing to believing it is the JMML and not just a fluke. He has lots of the characteristics of it. He may need more chemo soon. He is such a strong little man. Jonathan and I still pray to Jesus and Grandma that they make him better soon and watch over him. I also know that in addition to his special guardian angel Grandma Keeven, he also has 2 very special little angels up there pulling for him.
Gotta run and check on Z and declutter my bedroom. Love to you all!
Zachary is doing well and Jason and I are in the process of decluttering the house and organizing his stuff. Gotta take the Christmas tree down still!
Unfortunately, none of us were a match for Z. His WBC are up again from 10k to 17k. He got a blood transfusion on Wednesday before leaving because the chemo caused his red cells and iron to go down a bit. He was up to 8lbs and 5oz when we left!
We go see the hematologist tomorrow. He will do another WBC. We are waiting on a call from Children's hospital about the bone marrow transplant.
I want to thank everyone for their prayers. I also want to thank everyone that brought us food, visited us, called and emailed. You all are such a wonderful support system for us and I have no idea how we'd manage without you all so thank you!!!! I know there are many emails and calls that I haven't returned and I do apologize. We are just trying to settle in w/all this new stuff we have to do and keep Jonathan on his normal routine. I need to thank my friend Julie for sending Zachary a hat for his birth! Julie we love it! I will post pictures of him in it soon. You are so sweet. Our friend Kristin made the hat too. I'll have to post her website cus she does great work!
Jason's parents arrive on Friday and I am so thankful. He is returning to work on Monday and I have to admit, he has been handling a lot of the tube stuff b/c I am too nervous. I guess I have to step up to the plate and do my part. I nearly fainted at the hospital when they showed us how to insert the feeding tube. I can't even watch them change the dressing on his central line!
Anyway, I know I am forgetting stuff so please forgive me. We are closing to believing it is the JMML and not just a fluke. He has lots of the characteristics of it. He may need more chemo soon. He is such a strong little man. Jonathan and I still pray to Jesus and Grandma that they make him better soon and watch over him. I also know that in addition to his special guardian angel Grandma Keeven, he also has 2 very special little angels up there pulling for him.
Gotta run and check on Z and declutter my bedroom. Love to you all!
Sunday, January 6, 2008
Going strong
Zachary is now at 8lbs and 1 oz! This is huge! He is doing so well. He still pukes a bit but not nearly as much as b/f and he is eating more so that is good.
We will for sure be in the hospital until at least Tuesday. They are monitoring his WBC, which is down to 10K and is normal, and they are watching his red blood cells too. Due to the chemo there is a chance he may need a transfusion, but at this time, he is not in need of one.
He is smiling more and likes to lay on the bed and stretch and watch what is going on. I can see him fattening up before my very eyes.
Jonathan came up there today and was good and kept saying the doctors are making Zachary all better.
He may have to come home with a feeding tube for supplemental feedings and even though that makes me nervous, I know we'll manage.
We are hoping to have the blood test results tomorrow...I think I typed that before huh? Well let's just say we hope to have them VERY soon!
Here are some pictures of Zachary. Just in 2-3 days you can see how his face filled out!
We will for sure be in the hospital until at least Tuesday. They are monitoring his WBC, which is down to 10K and is normal, and they are watching his red blood cells too. Due to the chemo there is a chance he may need a transfusion, but at this time, he is not in need of one.
He is smiling more and likes to lay on the bed and stretch and watch what is going on. I can see him fattening up before my very eyes.
Jonathan came up there today and was good and kept saying the doctors are making Zachary all better.
He may have to come home with a feeding tube for supplemental feedings and even though that makes me nervous, I know we'll manage.
We are hoping to have the blood test results tomorrow...I think I typed that before huh? Well let's just say we hope to have them VERY soon!
Here are some pictures of Zachary. Just in 2-3 days you can see how his face filled out!
Saturday, January 5, 2008
Friday, January 4, 2008
Today was our LAST CHEMO SHOT!!!
We are still waiting on the blood test results...both is final bone marrow results and to see if any of us are matches. The wait is so stressful!
We are now only supplementing with the feeding tube. Our goal is 18 ounces a day, 3 oz every 3 hrs from 6am - 9pm and letting him eat what he wants at night. If he doesn't bottle feed 3 oz then the remainder goes in the feeding tube. He kept down his last 4 feedings so this is great and for each one he ate about 1.5 to 2 oz.
His weight today was 7 pounds and 14 ounces!!!! Everyone can see him fattening up!
I am returning to work on Friday, January 11th. This is incredibly hard and scary for me. I don't want to leave him and the more I think about it, the more it tears me up. Everything is so out of my control but when I sit and hold him and take care of him, the world feels right.
Jonathan is doing well. His bond with Daddy is growing stronger every day. He prays for Z to get better and can't wait to go to the "hopistal" to see him or rather terrorize him! He lasts a good 15 min and then he goes into crazy mode!
We are still praying this is all some fluke but are expecting the worst. I know you can never prepare for this but I'm trying.
Zachary is really doing great. He looks wonderful and is so much more active and trying to smile. I got some pictures of him and I will post them later today.
We are still waiting on the blood test results...both is final bone marrow results and to see if any of us are matches. The wait is so stressful!
We are now only supplementing with the feeding tube. Our goal is 18 ounces a day, 3 oz every 3 hrs from 6am - 9pm and letting him eat what he wants at night. If he doesn't bottle feed 3 oz then the remainder goes in the feeding tube. He kept down his last 4 feedings so this is great and for each one he ate about 1.5 to 2 oz.
His weight today was 7 pounds and 14 ounces!!!! Everyone can see him fattening up!
I am returning to work on Friday, January 11th. This is incredibly hard and scary for me. I don't want to leave him and the more I think about it, the more it tears me up. Everything is so out of my control but when I sit and hold him and take care of him, the world feels right.
Jonathan is doing well. His bond with Daddy is growing stronger every day. He prays for Z to get better and can't wait to go to the "hopistal" to see him or rather terrorize him! He lasts a good 15 min and then he goes into crazy mode!
We are still praying this is all some fluke but are expecting the worst. I know you can never prepare for this but I'm trying.
Zachary is really doing great. He looks wonderful and is so much more active and trying to smile. I got some pictures of him and I will post them later today.
January 3rd
I am posting my updates from a few days ago since I haven't been home in a while.
We are still waiting for a final test from Z's bone marrow test. They call it a "fish" test but I know it is spelled differently. This will determine if he has the chromosome for JMML and then tell us how aggressive it is. Apparently I was confused, JMML IS cancer but not as aggressive as acute lukemia. So JMML is the smoke and acute lukemia is the fire. I also got some more information cleared up and just some facts:
We are still waiting for a final test from Z's bone marrow test. They call it a "fish" test but I know it is spelled differently. This will determine if he has the chromosome for JMML and then tell us how aggressive it is. Apparently I was confused, JMML IS cancer but not as aggressive as acute lukemia. So JMML is the smoke and acute lukemia is the fire. I also got some more information cleared up and just some facts:
- Z will not be in the hospital the entire 100 days after the transplant and it should be done at Childrens here in St. louis.
- The donor of the bone marrow will be under general anesthesia and it takes about an hour.
- Z is at 7lbs and 13oz and the feeding tube is on continuous feed and cut down from 10cc's to 5cc's.
- He must be hospitalized 24 hours after last chemo shot and the last shot is on Friday.
- His white blood cell count is down from the 53k to 18k. This is great!
- Our main goal is to make sure that Z is bottle feeding and thriving on that before we can take him home.
Wednesday, January 2, 2008
Happy 6 weeks!
I never imagined that on Z's 6 week birthday he'd be in the PICU. I guess no one ever imagines something like this happening to them or their child. It is so unfair that these poor kids have to endure this.
Z had a good night last night. He ate 2 ounces before bed and slept pretty darn good. I on the other hand did not but that's okay.
I saw the gastro doc b/f I left the hospital and she said he is tolerating his feeding tube well. He almost met his calorie intake yesterday and his weight is staying steady and slowly increasing.
We are waiting on the hematologist to give us the rest of the bone marrow test results on Z. I also asked him about my nephews cord blood that is banked and he said it is just a matter of a phone call to see if he is a match. How amazing would that be?
Z is very alert and active these days. I swear he stares at me for hours and when I nurse comes in he stares at her. He has quite a fan base up there. We have other nurses stopping in to see him and hold him. They don't even mind when he pees on them. They all LOVE him and are so incredible with him.
We did turn off the feeding tube this morning b/c since he is bottle feeding and it is increasing he had a really full tummy and was miserable so they had to drain some out. He was MUCH better after that.
Nothing really new to report. Thank you all again for the prayers and support!
Z had a good night last night. He ate 2 ounces before bed and slept pretty darn good. I on the other hand did not but that's okay.
I saw the gastro doc b/f I left the hospital and she said he is tolerating his feeding tube well. He almost met his calorie intake yesterday and his weight is staying steady and slowly increasing.
We are waiting on the hematologist to give us the rest of the bone marrow test results on Z. I also asked him about my nephews cord blood that is banked and he said it is just a matter of a phone call to see if he is a match. How amazing would that be?
Z is very alert and active these days. I swear he stares at me for hours and when I nurse comes in he stares at her. He has quite a fan base up there. We have other nurses stopping in to see him and hold him. They don't even mind when he pees on them. They all LOVE him and are so incredible with him.
We did turn off the feeding tube this morning b/c since he is bottle feeding and it is increasing he had a really full tummy and was miserable so they had to drain some out. He was MUCH better after that.
Nothing really new to report. Thank you all again for the prayers and support!
Tuesday, January 1, 2008
2008
I decided to create this blog to keep family and friends up to date on the status of Zachary. I will try to keep this updated and give as many facts as I can. Forgive me if my emotions get in the way and please do not pass judgment on me.
On December 26, 2007 Zachary James was admitted to the hospital at 5 weeks old. Z was not gaining weight, losing it in fact. He had reflux, a cough, sunken soft spot and was only eating 10oz a day. We sent him as a direct admit so that he could be tested to find a diagnosis.
His white blood count was high and after 2 days it kept getting higher. We did a bone marrow test on him and the hematolgist suspected Juvenile Myelomonocytic Lukemia or JMML . This disease is so rare, 3 in 1 million! The only cure for this disease is a bone marrow transplant.
As of today, January 1, 2008, Zachary is on low doses of Chemo and it is keeping his WBC down. He is now on a feeding tube and has gained nearly one pd since birth, 7lbs and 12 oz. When admitted he was also diagnosed w/a broken collar bone (YOUCH), pnuemonia, (confirmed) reflux and later H-flu. He is on Pepcid and mylanta and an antibiotic and is currently in the PICU.
He is my little trooper and never complains unless he is unswaddled! He has a central line in so they do not have to poke him for blood. Thank goodness. The pnuemonia is gone and we need to get Z eating 3oz every 3hrs rather than the 1oz every 3hrs. We hope to move him to the main pediatric floor tomorrow.
Jason, Jonathan and I sent off bloodwork yesterday to be tested to see if we are a bone marrow match. My hopes and prayers are that it is Jason or I. I can't imagine both my boys in the hospital. We were informed today that the BMT will take place at Children's hospital here or in Cincinnati or Minnesota. Z can come home once we get the other bone marrow test back and he gains some more weight. We hope in a day or so.
My brother and sister in law banked my nephews cord blood and offered it to us for Z. I am so grateful for this. I am speaking to his hematologist about this and hope to find out more this week.
We are blessed with so much support...family and friends and even strangers. While 2007 was a rough year and I don't think I can handle a repeat of that year, I know we will be okay. God will see too. With my Mother's passing in 2007, I was devastated taht she would never meet Z. Now I realize she is up in heaven and watching over Z and us. I know Mom will see us through this and even though my heart breaks that I can't pick up the phone and call her, I know she is with me.
We are thankful for any prayers that you can send our way.
On December 26, 2007 Zachary James was admitted to the hospital at 5 weeks old. Z was not gaining weight, losing it in fact. He had reflux, a cough, sunken soft spot and was only eating 10oz a day. We sent him as a direct admit so that he could be tested to find a diagnosis.
His white blood count was high and after 2 days it kept getting higher. We did a bone marrow test on him and the hematolgist suspected Juvenile Myelomonocytic Lukemia or JMML . This disease is so rare, 3 in 1 million! The only cure for this disease is a bone marrow transplant.
As of today, January 1, 2008, Zachary is on low doses of Chemo and it is keeping his WBC down. He is now on a feeding tube and has gained nearly one pd since birth, 7lbs and 12 oz. When admitted he was also diagnosed w/a broken collar bone (YOUCH), pnuemonia, (confirmed) reflux and later H-flu. He is on Pepcid and mylanta and an antibiotic and is currently in the PICU.
He is my little trooper and never complains unless he is unswaddled! He has a central line in so they do not have to poke him for blood. Thank goodness. The pnuemonia is gone and we need to get Z eating 3oz every 3hrs rather than the 1oz every 3hrs. We hope to move him to the main pediatric floor tomorrow.
Jason, Jonathan and I sent off bloodwork yesterday to be tested to see if we are a bone marrow match. My hopes and prayers are that it is Jason or I. I can't imagine both my boys in the hospital. We were informed today that the BMT will take place at Children's hospital here or in Cincinnati or Minnesota. Z can come home once we get the other bone marrow test back and he gains some more weight. We hope in a day or so.
My brother and sister in law banked my nephews cord blood and offered it to us for Z. I am so grateful for this. I am speaking to his hematologist about this and hope to find out more this week.
We are blessed with so much support...family and friends and even strangers. While 2007 was a rough year and I don't think I can handle a repeat of that year, I know we will be okay. God will see too. With my Mother's passing in 2007, I was devastated taht she would never meet Z. Now I realize she is up in heaven and watching over Z and us. I know Mom will see us through this and even though my heart breaks that I can't pick up the phone and call her, I know she is with me.
We are thankful for any prayers that you can send our way.
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