Carver has an important test tomorrow. The doctors will examine his kidney function to determine the amount of chemotherapy he can handle. We pray that everything goes smooth with this test and the results are accurate. This will be done by a special x ray technique through his blood stream. He will only need an iv with this test as opposed to a urine catheter or a large amount of blood drawn (60 ml).
Jenni
Wednesday, November 30, 2011
Sunday, November 27, 2011
Time of Thanksgiving
Jenni and I have enjoyed five days with Granton and Kaylynn here in Kansas City. Their Aunt Neesie brought them up and then helped out by watching the baby when Jenni was with me and the kids. It was so good to see them. We miss them every minute they are gone. However, we know they are having a great time while while they are on are on the farm. While they were staying with us, I told Granton, "Meme and Papa are working cows today" He said, "What? Without me!?" Looks like he is turning into a cowboy and Kaylynn is getting more ornery by the day. They are are so much fun. As for Carver, he is getting bigger by the day. He is up over ten and a half pounds now. He loves to eat and sleep, he especially likes sleeping on his mom's chest. 
We have made a decision on his transplant. There are a lot of details that I won't get into but we have chose to use cord blood. This means we will probably start the kemo around the 7th or 8th and the day of transplant will be around the 16th. If all goes well, Carver can leave Kansas City a hundred days later. Obviously, we are praying for all to go well. As for now all is well. Jenni and I are watching a movie together in Carver's room while Carver is sleeping on On Jenni's chest. We have have a lot to be thankful for, including all your prayers. Thank you.Tuesday, November 22, 2011
Two Donor Choices
As you know, writing blogs is beneficial for our family and friends to stay informed. But, it also helps to organize information and thoughts on our end, as well. I will do my best to explain what I understood from the meeting. Then, Daniel will probably write his perspective, also. Here's the bottom line. We met with our team yesterday afternoon for at least two hours to discuss Carver's transplant options. Daniel and I are both leaning toward the same match. However, we are still taking time to pray and process all the details. We want to choose the right match for Carver, of course, and our dilema is fortunate. Instead of just one good possibility, there are two. This is what we learned about both.
The female bone marrow donor is one choice. She is a 10/10 match that we considered for Granton three and a half years ago. She might still be a consideration for Granton in the future, actually. This bone marrow donor has a non-engraphtment (rejection) risk less than 5%. Also, the risk for future immune boosters (ivig) is less. This is what Granton takes now because of his b-cell setback. By the way, Granton's b-cell condition is likely the result of his fatal circumstances. We had to give him lower doses of chemotherapy treatment and infuse his transplant quickly so he could survive. The cord blood transplant was available right away. You might recall that scids babies typically don't live past their first birthday. Granton was already 8 mo.and super sick. Anyway, back to the donor option. This match could take a longer amount of time to set up--maybe 4-6 weeks from now. And, has a higher risk for GVHD.
So, we learned new information about the GVHD (graft versus host disease) in connection to unrelated bone marrow donors. Remember, GVHD occurs when the donor cells recognize that the recipient's body is different. The new cells start attacking the body like your immune system would attack an infection. Well, with the female choice Carver will have a 50-60% chance of Accute GVHD. Accute means during the first 100 days after transplant. Also, Carver will have a 20-25% risk of Chronic GVHD which can occur anytime in life after 100 days post-transplant. Furthermore, because she is a female who has had children there is a higher chance for GVHD. Her cells are less forgiving. They have more experience detecting differences and might not recognize Carver's body as her own. Treatments like steroids would be used to correct the GVHD at different levels.
The next choice is a cord blood with a 6/8 match. Again, if we choose the cord blood match Carver will have less risk for b-cell complications than Granton because he will receive more chemotherapy treatment than Granton received. The cord blood has a 25- 30% Accute GVHD risk and even less for Chronic GVHD. A mismatch is more forgiving of GVHD because the cells are naive/babies. Other factors to consider are that the non-engraphtment (rejection) risk is 10 % and the cord blood can be available sooner. Also, we learned that other transplant hospitals are now only considering cord blood transplants. And, more cord blood transplants are being done rather than bone marrow, especially with unrelated donors.
Please understand that this is all very complicated to me. I try to explain it without confusion, but sometimes I confuse myself. And, on top of that I am a visual learner. Again, writing it out helps, too.
Daniel and I are praying and will make our decision tomorrow when we are both here at the hospital. I am also praying that Carver will keep nursing through the chemotherapy and after transplant. So far he is gaining weight and eating great. I am feeding on demand so that he will have enough practice and show interest in nursing when he doesn't feel well. This way we do not have to undergo alternative methods to feeding him.
Jenni
The female bone marrow donor is one choice. She is a 10/10 match that we considered for Granton three and a half years ago. She might still be a consideration for Granton in the future, actually. This bone marrow donor has a non-engraphtment (rejection) risk less than 5%. Also, the risk for future immune boosters (ivig) is less. This is what Granton takes now because of his b-cell setback. By the way, Granton's b-cell condition is likely the result of his fatal circumstances. We had to give him lower doses of chemotherapy treatment and infuse his transplant quickly so he could survive. The cord blood transplant was available right away. You might recall that scids babies typically don't live past their first birthday. Granton was already 8 mo.and super sick. Anyway, back to the donor option. This match could take a longer amount of time to set up--maybe 4-6 weeks from now. And, has a higher risk for GVHD.
So, we learned new information about the GVHD (graft versus host disease) in connection to unrelated bone marrow donors. Remember, GVHD occurs when the donor cells recognize that the recipient's body is different. The new cells start attacking the body like your immune system would attack an infection. Well, with the female choice Carver will have a 50-60% chance of Accute GVHD. Accute means during the first 100 days after transplant. Also, Carver will have a 20-25% risk of Chronic GVHD which can occur anytime in life after 100 days post-transplant. Furthermore, because she is a female who has had children there is a higher chance for GVHD. Her cells are less forgiving. They have more experience detecting differences and might not recognize Carver's body as her own. Treatments like steroids would be used to correct the GVHD at different levels.
The next choice is a cord blood with a 6/8 match. Again, if we choose the cord blood match Carver will have less risk for b-cell complications than Granton because he will receive more chemotherapy treatment than Granton received. The cord blood has a 25- 30% Accute GVHD risk and even less for Chronic GVHD. A mismatch is more forgiving of GVHD because the cells are naive/babies. Other factors to consider are that the non-engraphtment (rejection) risk is 10 % and the cord blood can be available sooner. Also, we learned that other transplant hospitals are now only considering cord blood transplants. And, more cord blood transplants are being done rather than bone marrow, especially with unrelated donors.
Please understand that this is all very complicated to me. I try to explain it without confusion, but sometimes I confuse myself. And, on top of that I am a visual learner. Again, writing it out helps, too.
Daniel and I are praying and will make our decision tomorrow when we are both here at the hospital. I am also praying that Carver will keep nursing through the chemotherapy and after transplant. So far he is gaining weight and eating great. I am feeding on demand so that he will have enough practice and show interest in nursing when he doesn't feel well. This way we do not have to undergo alternative methods to feeding him.
Jenni
Sunday, November 20, 2011
Bubble Boy 2 Moves In
We are officially settled in the BMT (Bone Marrow Transplant) Center now. We have moved from the NICU to another cozy room with more space. Our friend and child life coordinator decorated the walls with "Cars" characters. Lightning McQueen and Tow Mator are smiling above Carver's crib. His "bubble" also includes a bathroom, bed, recliner, and tv making a nice little living space. Daniel, Carver and I have been watching movies and soaking up a relaxing, quiet day. We are looking forward to our kid's company soon for Thanksgiving. Tomorrow, we meet to discuss our donor options.
Jenni
Jenni
Monday, November 14, 2011
Possible Match
Before Granton received his cord blood transplant we were weighing our donor options. One of those options was a female bone marrow donor with a 6/6, 10/10 match. The option we chose for Granton was a 5/6 male cord blood. This was the right choice for Granton because he was so sick and still had RSV. We thought the bone marrow match would aggressively attack the RSV (something his body couldn't handle). So, today we learned that the female bone marrow donor is still in the registry. Our doctor already contacted the National Bone Marrow Registry to try to locate her. We are waiting to hear if she is willing to donate for Carver's transplant. Carver will receive a stronger dose of chemotherapy than Granton had, as well. When he is a month old his kidneys will be more developed. Then, we can proceed with the chemotherapy process (approximately 1 week) followed by the transplant.
Jenni
Jenni
Carver's Medicine
This is my favorite swaddling picture. Carver gave me a cute smile this morning with eyes open!
Jenni
Sunday, November 13, 2011
Weekend With Kids
Today, Granton and Kaylynn visited the NICU while riding in a hospital wagon. We let them look through the window at baby Carver. They wanted to see him and I wanted them to see why we here. We had a great visit this weekend. They played at three different parks and Granton got to play at his "favorite" hospital. That is his version of Children's Mercy. Carver is now wide awake soaking up time with his Dad. Dad was keeping brother and sister occupied and missed holding him.
Soon, sometime this week, we will find out the official result of SCIDS. Carver has another CBC lab tomorrow. Otherwise, we are enjoying our time in the NICU waiting for the transplant. I stay busy nursing, pumping, eating, napping or reading a book. I also have a DVD player now for movies and this computer to help with the updates. I have not been bored yet. One day I was anxious to go out doors. But, our room is isolated and quiet. I have big windows to let in sunlight. And, I love to cuddle Carver. He can pretty much stay attached to my lap no matter what I choose to do. Also, he loves to take his medicine. He nurses them right down from the syringe like Granton used to. It's cute.
A verse I have chosen to memorize specific for this time and the holiday approaching says: Be joyful always, pray continually, give thanks in all circumstances for this is God's will for you. 1 thess. 5:16-18. I feel fortunate to be on the flip side of things now compared to our last stay at Children's Mercy. I am more aware of hurting people around me. I have been able to pray with two other moms in the nursery. And, have had many conversations with other nurses about hard circumstances they have gone through. This makes me thankful to know that I am not alone in my struggles and again allows me to see a positive perspective. We are grateful for your prayers.
Jenni
Tuesday, November 8, 2011
Granton and Carver are the same in more ways than one
Saturday, November 5, 2011
More Good than Bad
Thanks Denise for updating everyone. Well, the last few days have been a bit crazy. On Thursday I left wrestling practice to bring home a healthy and happy mom and baby, but one phone call from K.C. changed all that. In less than one hour things changed from "everything is fine" to "Carver has SCIDs." Let me take a quick time out to explain how this was confused. Carver had a CBC test that showed all his blood count numbers were normal. He had white blood cells so it was assumed he had an immune system. However, a more detailed test was done that took longer and it showed he was missing the exact same T cells that Granton was missing. So anyway, Jenni and I rushed home to pack a few items and then we put on our masks and brought Carver to Children's Mercy. Obviously, this hit us very hard. I had stayed up most of the night with Carver the day before to make sure Jenni could sleep. So I was very tired when we found out. I learned with Granton that we have to get our sleep or emotions get us. However, Jenni and I had a good drive to K.C. as Carver slept. This was not what I had expected an hour or so before, but the Lord has brought us through much harder things then this before. This is obviously similar to what we went through with Granton but there are some very big differences. Let me break down the "good" and "bad" with the bad first because I like to end things on "good" notes.
BAD-
I think the thing that is heaviest on our hearts, especially Jenni's is separation. Granton and Kaylynn are as happy as can be but they can't be with us. Carver requires all of Jenni's time and energy and kids are obviously not allowed around him. We are all going to spend a lot of time apart. Jenni has never been away from the kids like this, not even close, and I am a family man. Outside of exercise, I don't have any hobbies. I love family time. So this will be hard. On the bright side, Granton and Kaylynn will have each other and always be with people who they love very much and love them very much. Jenni will have Carver to hold and care for and Carver will have Jenni. I will stay very busy with teaching and coaching and Jenni and I have set aside time for a phone date everyday so you can expect the phone to be busy after 6:45. I will also call the farm a bunch but the kids are usually to busy having fun to talk to dad and that is a good thing.
The other main head of this multi headed monster is Time. Carver will be in the NICU for about a week or so and then move to the floor. Jenni will then move into his room with him as no one is allowed to sleep in Carver's NICU room but Carver. He does enough of that for two people :) Hopefully, we will find a donor; there is a 25% chance it will be Kaylynn. If we find a donor quickly, Carver will go through a week of anit-rejection drugs. If I remember correctly, this is a kind of kemo. Then at six weeks, he gets a transplant. He will have to stay here for a minimum of 100 days after the transplant. However, he may be allowed to live in the Ronny Mac house for the end of that. If so, the kids and I may move in the Mac house and we will all be together again. We haven't figured that out yet. But I am going back to work next week to save my sick days for living here in the Mac house post transplant in case it is an option for us to all live here together.
Of course there are many other little things but time and separation, or perhaps I should say time of separation are our biggest challenges right now.
GOOD-
Carver is healthy. It is so nice to hear the Dr. say after rounds. Well, everything looks good, we are just going to keep doing what we are doing. This is mmusic to my ears. I hated rounds before because we would have to hear about bad results and numbers that would likely result in Granton's death every time after rounds before. Once again our kid does not match the other kids in the ICU but this time is because he is so HEALTHY. On top of that he is a big baby so he even looks different. You may remember I felt shell shocked after watching Granton crash so many times and bells and dinging in a hospital room just set me on edge. Well, Carver has a very slow resting heart rate and it causes the monitor to ding. I still jump and look at it, but now I find good numbers. He is relaxed and his heart does not have to beat many times and his breath rate is normal and he keeps a high oxygen saturation level. So in stead of my heart dropping and my muscles tensing and eyes tearing when I see the monitor, my response is "Oh, cool."
We also have more knowledge then before and we have it sooner then before. It is so nice to know what is wrong and have a plan to keep it form getting worse. I will say it is a bit daunting because we KNOW what is ahead and it is not easy. However, I would choose this way every time. I hated sitting in the conference room for day after day going over hard things to swallow. This time we understand what should be ahead and the doctors understand what we understand.
The biggest comfort is knowledge that our God is an awesome God and he will see us through. Jenni and I always said we want to honor him in everything and to God be the glory. This is no different. Also, we take comfort in knowing there are many people praying for us. I immediately teared up when I saw a little text message yesterday that said the FCA got together and prayed for you this morning." Things like that are so wonderful. So keep praying. If you read this blog back when it was made for Granton, you know that regret looks back, worry looks around but faith looks up. Lets all keep praying and keep looking up.
BAD-
I think the thing that is heaviest on our hearts, especially Jenni's is separation. Granton and Kaylynn are as happy as can be but they can't be with us. Carver requires all of Jenni's time and energy and kids are obviously not allowed around him. We are all going to spend a lot of time apart. Jenni has never been away from the kids like this, not even close, and I am a family man. Outside of exercise, I don't have any hobbies. I love family time. So this will be hard. On the bright side, Granton and Kaylynn will have each other and always be with people who they love very much and love them very much. Jenni will have Carver to hold and care for and Carver will have Jenni. I will stay very busy with teaching and coaching and Jenni and I have set aside time for a phone date everyday so you can expect the phone to be busy after 6:45. I will also call the farm a bunch but the kids are usually to busy having fun to talk to dad and that is a good thing.
The other main head of this multi headed monster is Time. Carver will be in the NICU for about a week or so and then move to the floor. Jenni will then move into his room with him as no one is allowed to sleep in Carver's NICU room but Carver. He does enough of that for two people :) Hopefully, we will find a donor; there is a 25% chance it will be Kaylynn. If we find a donor quickly, Carver will go through a week of anit-rejection drugs. If I remember correctly, this is a kind of kemo. Then at six weeks, he gets a transplant. He will have to stay here for a minimum of 100 days after the transplant. However, he may be allowed to live in the Ronny Mac house for the end of that. If so, the kids and I may move in the Mac house and we will all be together again. We haven't figured that out yet. But I am going back to work next week to save my sick days for living here in the Mac house post transplant in case it is an option for us to all live here together.
Of course there are many other little things but time and separation, or perhaps I should say time of separation are our biggest challenges right now.
GOOD-
Carver is healthy. It is so nice to hear the Dr. say after rounds. Well, everything looks good, we are just going to keep doing what we are doing. This is mmusic to my ears. I hated rounds before because we would have to hear about bad results and numbers that would likely result in Granton's death every time after rounds before. Once again our kid does not match the other kids in the ICU but this time is because he is so HEALTHY. On top of that he is a big baby so he even looks different. You may remember I felt shell shocked after watching Granton crash so many times and bells and dinging in a hospital room just set me on edge. Well, Carver has a very slow resting heart rate and it causes the monitor to ding. I still jump and look at it, but now I find good numbers. He is relaxed and his heart does not have to beat many times and his breath rate is normal and he keeps a high oxygen saturation level. So in stead of my heart dropping and my muscles tensing and eyes tearing when I see the monitor, my response is "Oh, cool."
We also have more knowledge then before and we have it sooner then before. It is so nice to know what is wrong and have a plan to keep it form getting worse. I will say it is a bit daunting because we KNOW what is ahead and it is not easy. However, I would choose this way every time. I hated sitting in the conference room for day after day going over hard things to swallow. This time we understand what should be ahead and the doctors understand what we understand.
The biggest comfort is knowledge that our God is an awesome God and he will see us through. Jenni and I always said we want to honor him in everything and to God be the glory. This is no different. Also, we take comfort in knowing there are many people praying for us. I immediately teared up when I saw a little text message yesterday that said the FCA got together and prayed for you this morning." Things like that are so wonderful. So keep praying. If you read this blog back when it was made for Granton, you know that regret looks back, worry looks around but faith looks up. Lets all keep praying and keep looking up.
Friday, November 4, 2011
His Strength
Well, it is Denise again sending everyone an update. We don't have a great deal of news but I know that everyone wants to know any news we get.
Carver is in the NICU for the next 2 weeks, they have him on several antibiotics to prevent any infection as well as IGIV to give him an immune boost. We know he is getting great care there the only problem is that Jenni is not able to stay the night there with him, so she is staying at the Ronald McDonald house for now. In about 2 weeks he will move to another wing where Jenni will be able to stay all night with him.
It never ceases to amaze me how well Daniel and Jenni handle these difficult times. When I talked to them earlier they sounded good, and were getting a plan in place to take care of all the kids. Do continue to pray for their strength as it is very difficult not having the family all in one place for a while. I know without a doubt they would tell you that it is not their own strength but God pouring his strength into them.
2 Corinthians 12:9 And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.
Carver is in the NICU for the next 2 weeks, they have him on several antibiotics to prevent any infection as well as IGIV to give him an immune boost. We know he is getting great care there the only problem is that Jenni is not able to stay the night there with him, so she is staying at the Ronald McDonald house for now. In about 2 weeks he will move to another wing where Jenni will be able to stay all night with him.
It never ceases to amaze me how well Daniel and Jenni handle these difficult times. When I talked to them earlier they sounded good, and were getting a plan in place to take care of all the kids. Do continue to pray for their strength as it is very difficult not having the family all in one place for a while. I know without a doubt they would tell you that it is not their own strength but God pouring his strength into them.
2 Corinthians 12:9 And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.
Thursday, November 3, 2011
Baby Carver
There is a lot to update everyone on so I will do the best I can. Just so you know this is Denise (Daniel's sister) doing the best I can to relay the information.
Baby Carver arrived on Tuesday at 5:30 pm. He weighed 9 pounds and is about 22 inches, I am not for sure about the length. But ten fingers, and ten toes, and a head full of hair.
Of course they started testing right away for SCID's and they found out today that he is positive for SCID's. Carver has been taken to Children's Mercy in Kansas City so they can look for a donor and begin the process for a transplant. We are thankful that we know what to look for early instead of after he is sick like it was with Granton.
Granton and Kaylynn are in Kansas with my parents for now. Right now this arrangement is indefinite as Carver will have a minimum of 140 days in the hospital. They are doing well playing on the farm and getting lots of attention.
Please be in prayer for the whole family. Carver is doing great right now but we know there are some rough days ahead. Granton and Kaylynn are having a blast but I am sure this will not be so easy on them either. Jenni is in Kansas City with Carver, she has just had a baby and is now seperated from her family. Daniel is doing everything he can to work and take care of his family that is scattered for the time being.
We have seen God work so many miracles in our lives and we trust that He is coniniuing to work. We know that we were never promised a life of ease on this earth that is cursed by sin, however we are promised that He will never leave us or forsake us and He will never give us more than we can bare.
I was talking to Jenni several months ago and we were talking about all of the people in the bible who we look at with such adomration. But none of those people had an easy life. It is through their trials that we see God work, and what a great work He does. While I have so many prayers for my brother and sister and kiddos, my number one prayer is that people will see God and his greatness through these struggles.
Baby Carver arrived on Tuesday at 5:30 pm. He weighed 9 pounds and is about 22 inches, I am not for sure about the length. But ten fingers, and ten toes, and a head full of hair.
Of course they started testing right away for SCID's and they found out today that he is positive for SCID's. Carver has been taken to Children's Mercy in Kansas City so they can look for a donor and begin the process for a transplant. We are thankful that we know what to look for early instead of after he is sick like it was with Granton.
Granton and Kaylynn are in Kansas with my parents for now. Right now this arrangement is indefinite as Carver will have a minimum of 140 days in the hospital. They are doing well playing on the farm and getting lots of attention.
Please be in prayer for the whole family. Carver is doing great right now but we know there are some rough days ahead. Granton and Kaylynn are having a blast but I am sure this will not be so easy on them either. Jenni is in Kansas City with Carver, she has just had a baby and is now seperated from her family. Daniel is doing everything he can to work and take care of his family that is scattered for the time being.
We have seen God work so many miracles in our lives and we trust that He is coniniuing to work. We know that we were never promised a life of ease on this earth that is cursed by sin, however we are promised that He will never leave us or forsake us and He will never give us more than we can bare.
I was talking to Jenni several months ago and we were talking about all of the people in the bible who we look at with such adomration. But none of those people had an easy life. It is through their trials that we see God work, and what a great work He does. While I have so many prayers for my brother and sister and kiddos, my number one prayer is that people will see God and his greatness through these struggles.
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