It's hard to believe that transplant day has already come and gone! All this time, since the first week when we learned that Jacob's cancer treatment would require a bone marrow transplant, we have been preparing for yesterday. It seemed like such a far off thing, something way down the road, in the distance that we would look forward to. All his chemo all his treatments were to prepare him for the transplant and believe it or not, it feels like that all went so fast. In the midst of it, it really didn't feel fast, but looking back, it feels like a whirlwind...maybe more like a tornado.
I know everyone is wondering how the boys are doing and how the transplant went. I'm sorry I haven't posted an update sooner, but well, it's been a little busy as you might guess. Thankfully, the hospital let Jericho stay overnight his first night after the donation. It made things so much easier and so nice to have the boys together for the first day. But needless to say, I haven't taken the time to sit down and write. Jericho just woke up from a 2 hour nap! And, Jacob slept too! I should have been sleeping with them, but I don't even know where the time went. Typical...some things never change.
There is sooo much I want to say, so much to tell, but I better start by saying that the transplant went perfectly and both boys are doing great! I am overwhelmed with the love that God has for my boys and how he has taken care of them and answered all of our prayers...and yours pertaining to this transplant.
Before I tell the story of how the day went, I really want to give a little background and share with you one of the many miracles and how God has answered our prayers so beautifully. With Jacob's diagnosis back in April, we had to wait a few days to find out the subtype of his Leukemia. This would determine his treatment plan and whether he would need a bone marrow transplant or not need one or whether it would be optional. Somehow, I just knew we were headed for transplant even before I understood the different subtypes and before we were told ours. Then, we waited while the boys were tested to see whether one of our other kids would be a match for Jacob and learned that if we didn't have a sibling match, they would search the worldwide directory of registered bone marrow donors to find a "close enough" match in a stranger. Somehow then, we also had a strong feeling that Jericho would be the match. Still, when we got the news and Dr. Barnette told us he was perfect, it was the greatest news of our lives and we were so thankful. Our little "caboose baby" was to save Jacob's life. As crazy as some may think, after 5 kids, we always knew we were going to want one more. We both hoped for a little girl and we were sure that's what we would get. I sometimes wonder if we had known he would be another boy, if we would have been so anxious. We didn't really think about that possibility until the ultrasound tech told us the news. We were stunned. It only took a few minutes though and we were thrilled to have boy number 5 on the way. Little did we know, that boy would be a savior and had he been a girl, well it can complicate the transplant even though it can and has been done...just easier when both donor and recipient are the same gender. Ever since we brought little Jericho home, we have looked at him in wonder at how much he looks and acts like Jacob...it's unreal how much they are alike - and I can almost say no suprise that they "match". Now, after yesterday, they will "match" even more in the most miraculous and unbelievable ways.
With all this just falling in to place and seeing a glimpse of God's plan for our boys, we still worried so much about the procedure. And, we worried about whether they would be able to collect enough marrow from little Jericho for his big 14 year old brother. Knowing that it was the only option for Jacob and his best chance of survival, that part was easy. The hard part was knowing that we would have to subject our little Jericho to something that would be painful to say the very least. Then, we were asked to participate in a "Clinical Study". Allowing your kid with Cancer to partake in a study that is researching cures for their type of cancer isn't so hard to do - especially if the study has been established for a while and is looking very promising and it's highly recommended by your doctor etc. etc. etc. On the other hand, allowing your perfeclty healthy little three year old to participate in a study that isn't going to do him any good for himself individually is a tough thing to do. Especially when you find out the study is very new. Here's the study:
Children's Oncology Group ASCT0631D:
A Comparison of Acute and Long-Term Toxicities in Bone Marrow Donors with and without
G-CSF Treatment Prior to Harvest: A Companion Study to ASCTO631
What the.... you mean they want to do a study on Jericho? The donor? This isn't about Jacob? What does all this mean???
Well, it turns out they are studying a new procedure in how they harvest bone marrow from donors. Let me explain...beginning with the standard way they "harvest" bone marrow.
The patient is sedated and asleep during the procedure and they insert a long needle through the back of the pelvis on both sides, just above the bum. They make a whole bunch of pokes and suction out as much marrow as the patient's size and weight will safely allow. The marrow is liquid and it's almost all stem cells. They "wash" it and filter it to be sure it is clean and to get out any possible little particles of bone that could have been collected with it and then it's ready for the recipient. Yesterday, I learned that they also add a little bit of fluid to the mix before it's given.
Another way to collect stem cells is to give the donor a drug called G-CSF (Filgrastim) or "Neupogen" before they donate for about 5 days. G-CSF helps to grow white blood cells and it can increase the number of stem cells in the blood and bone marrow. Nowadays, most adults who donate stem cells receive G-CSF and then they can donate right from an IV in their arm rather than having to be sedated and poked to get the cells. The Neupogen grows so many extra cells that they get circulated into the bloodstream and can be collected from a vein instead of in the bone.
The new way that the Children's Oncology Group is studying is to give this drug to children and then collect from the bone anyway because there would be a huge concentration of cells in the marrow when Neupogen is used. This method offers benefits to the recipient, but the risk to the donor isn't really known...so that is why they wanted to study Jericho if he got this method. The biggest benefit to Jacob is that he would get a much greater concentration of cells from Jericho and they know from past experience that greater numbers of cells means faster engraftment, faster recovery and a better survival rates. Well, that sold me...but not without a lot of worry. Josh was not convinced at all and was not willing to subject Jericho to anything other than the normal, proven methods that we knew were very safe for him. The doctors reassured us along with Jericho's pediatrician, nurses and lots of other people that neupogen is very safe and they use it all the time. (Most of the other families that I know from the hospital with kids fighting cancer have given their kids lots of neupogen to help them recover counts after chemo treatments) ...everyone reassured us that it would be safe, but we were still sceptical - even though we felt it would be good for Jacob and we would do anything to save him...and, we know Jericho would want to do anything to help him too. Still, the decision was ours and it was so tough.
The way the study works is that if you decide to do it, your case goes to the computer to be "randomly selected" whether your donor will receive the G-CSF Neupogen or not. They need to study both cases with and without the drug and you don't get to choose which way your case goes. We were torn.
Fervently, we prayed about this decision. We asked for guidance, we asked for wisdom, we asked for answers. Finally, one day in my car, on the way home from seeing Jericho's pediatrician after a long conversation with him about the study, I cried out to God with tears streaming down my face and Jericho in the back saying to me, "Mommy, you cry too much," I received my answer and I realized the beautiful thing about the study. I could choose to do it and I could put the whole thing in God's hands and let go. Did I trust Him to be able to "tell the computer" which side of the study was for us? I knew that if I could trust God enough to let Him make the decision, He would do what is best for both of our boys. If I chose not to do the study, then I would be taking all the power away and making the decision on my own as to what I was comfortable with and which way would be best. Well, I trust God more than I trust myself so I decided that I wanted to leave it up to him...and finally, I was filled with peace. After a few days of talking it over with Josh and then a whole day spent at the clinic discussing every angle of the decision with multiple doctors as well as a "neutral party" consultant to help us, we finally consented to go forward and do the study.
A few days later, when the computer "randomized" our case and we were informed that we were going to have the standard transplant and Jericho would not have to get neupogen shots, I have to admit that I was a little disappointed and confused. Josh and I were both totally convinced that if we agreed to the study, Jericho would be chosen to do the shots...that's why it was so hard for us to agree to. I had also convinced myself that the shots would be safe and better for Jacob. I was so worried that they wouldn't be able to take enough marrow from Jericho to ensure the best possible outcome for Jacob. It took me a little more time to come to peace with the decision God made, but I reminded myself that I had promised to trust Him and He promised me that He loved both of my boys and knew what was the best and safest choice for both of them. I accepted the decision because it was already made, but I still worried so much that we might not get enough. I tried to be sure Jericho got healthy things to eat and got his vitamins every day and I stressed about him not getting enough sleep or eating any junk food. This was a huge lesson in trust for me...and I really thought that I already trusted god "with all my heart". I try to live by the scripture that tells me to "Trust the Lord with all your heart and lean not on thy own understanding, in all your ways acknowledge him and He will direct your path." ...and yet, I still l
let those little fleeting worries consume my thoughts at times.
Last weekend, I was home with the kids on Sunday for church and went back to sleep at the hospital with Jacob Sunday night. I stayed long enough to get the kids to bed and put Jericho to sleep. I layed in bed beside Jericho 'till he was sleeping and held him as long as I could. As I got up to leave, I got to my knees beside him and with tears streaming down my cheeks again, I prayed. I put my hands on his little body while I prayed. I prayed for God to strengthen him, keep him healthy and give him enough rest and all that he would need to produce the little cells that Jacob needs to survive. Then, outloud with my hands on his back, I prayed for God to "be the neupogen" and multiply the cells in his body to produce an abundance of extra cells and ensure that there would be even more than enough to help Jacob. As I'm writing this, I realized that this was Sunday and if we had been chosen to do the G-CSF study, Jericho's neupogen shots would have started Monday morning, for 5 days before the transplant. I never made the connection until just now.
We got through the week and on Thursday, Josh called me to come home and go to the temple with him. John came to stay with Jacob at the hospital and Noelle watched the boys at home. I didn't make it in time to meet Josh and do a session together, but we both stayed in the Temple for about three hours without seeing each other, separately and indepentantly doing temple work, together. I finally found Josh in the celestial room, sitting in a chair with his head in his arms and quietly shuddering in his tears. We stayed there together for a long time, crying together, talking and praying. We had both put the boy's names on the Temple prayer roll and we went home to try and sleep before the big day.
In the morning, I had to drive to Noelle's house to pick up a carseat for Jericho. While I was gone, Josh had his moment to pray alone with Jericho like I had on the Sunday before. He gave him a father's blessing. Later that morning, Josh and his brother Nick gave Jacob a blessing in his hospital room as we waited for Jericho's freshly harvested bone marrow to be delivered.
At exactly 2:30, right on schedule, Jericho's precious bag of bone marrow arrived and the transplant began. The nurse hung the bag up on Jacob's IV pole and we all watched as it dripped down the line and into Jacob's heart to be pumped throughout his body. (sooo much more fun and way better to watch than chemo!) Jacob and Jericho snuggled in the hospital bed together while the bag drained. It was truly one of the most awe inspiring moments I have ever witnessed.
In another post, I will write about all the moments and events of the day. I want the boys to remember every moment of this amazing day as they were bonded together as true "blood brothers". It was such a long day with so much to remember, but I want to finish this story first. Just remember, the whole process went right and perfect and they are both doing well today.
This morning, the doctors came to visit and the boys were again snuggled up together in Jacob's hospital bed. They talked about what a little champion Jericho was and called him a superhero and then they told me the news that confirmed the miracle. Dr. McMannus explained that as they prepared the little bag of marrow, they actually counted the number of cells that were in there. She said that they calculate the number based on how many would be delivered per kilo of Jacob's body weight. They "like" to see one million cells per kilo. They "really like" to see two million cells per kilo. Three million cells per kilo is "really exciting!" Well, our little superhero Jericho gave Jacob 3.1 million cells per Kilo of Jacob's body weight (which is 72 kilos by the way!). That's a lot of cells...I would say a multitude of cells and even an ABUNDANCE of cells! ...Miracles can happen, prayers are answered...and I will never doubt the Lord again.