Hi All,
I’m probably back to 90% on my contact list. I decided to go ahead and send out what I know to who I have. If there is anyone you know that has stopped receiving my emails, please have them contact me and I will add them back to the list.
We have been to Birmingham today for a checkup, chemo, and IVIG.
To play catch up a little bit: Three weeks ago, Nick had CT scans to check the progress of the cancer/chemo. The CT scans showed that the cancer is no longer shrinking, but it isn’t growing either. Nick’s oncologist said that means the chemo is no longer working as effectively as it was. Nick’s cancer is considered stable at this point in time...not growing, not shrinking.
Because of the decrease in response to the chemo, it is time to step back and take a look at other options. There are really only a couple of options. One is to stop treatment and let God do His work as the Ultimate Physician. The other option is giving Nick more aggressive chemotherapy.
The oncologist does not want to put Nick through aggressive chemotherapy unless we can reach a complete cure. The best possible chance Nick has of reaching cure for the cancer is aggressive chemo, but the best chance at cure for the immune system disorder is a bone marrow transplant. The oncologist’s line of thought is that it would be in Nick’s best interest to use the aggressive chemo in conjunction with the bone marrow transplant.
In order to prepare Nick’s body for a bone marrow transplant, it is necessary to give enormous amounts of aggressive chemotherapy. These would be the same chemo drugs needed to fight the cancer now. There is only so much of certain chemo drugs that can be given.The oncologist doesn’t want to use up anything before we have determined if a bone marrow transplant is viable.
The oncologist has sent Nick’s medical records over to the bone marrow transplant doctors for review. They are in the process of reviewing ALL of Nick’s medical history to determine if he qualifies for a bone marrow transplant.
He is also trying to convene all the other specialists to discuss Nick’s extensive medical history and how the various other medical needs will be affected by the aggressive chemo and subsequent bone marrow transplant.
Now to today’s visit...
Nick’s blood work is showing improvement, especially in his iron levels. This is good news. The oncologist told me today that he wasn’t really concerned much with Nick’s IGG level, because he wasn’t going to change anything anyway. Nick’s IGG levels have been consistently normal for almost three months now. Obviously the IVIG has reached a maintenance level. This is another good thing.
As for the PTLD/lymphoma, Nick and I have been talking about little else these past few days. Nick hasn’t wanted to talk about it at all until recently. We have talked and prayed. Then we talked and prayed more. Nick was able to sit down with his doctor today and ask the doctor the same questions he’s been asking me. The doctor confirmed everything that I have been sharing with Nick. The oncologist took Nick’s concerns about aggressive chemo very seriously. Nick does not want to the chemo or it’s side effects to interfere with his life right now. I completely understand that. Nick has lived a life interrupted.
What do we do right now? Well, the oncologist told us this morning that he is going to add in one more chemo drug, rituximab. This drug was a part of Nick’s treatment plan when he had chemo 4 1/2 years ago. The reason that the oncologist hasn’t already given it to Nick this go around is because the cancer cells did not look like this drug would do any good. Another big reason is the effect this chemo will have on Nick’s already compromised immune system.
Why now? This drug is the only thing we have left to add to the arsenal in the hopes of controlling the cancer or even shrinking it again. This drug is hopefully going to be what keeps Nick stable until a decision can be made about the bone marrow transplant and the aggressive chemo. Nick will get his first dose on July 22. Today Nick received the same chemo he has been getting, as well as IVIG.
For right now, we will maintain status quo. Nick is completely thrilled with this combined decision we all were able to reach. He is completely at peace. Nick has told me repeatedly that he feels like God has a plan for him and he thinks we need to give God more time to work. (These were his exact words.)
The oncologist said that he wants to meet with other specialists. Due to scheduling difficulties among so many doctors, there is also a very good possibility that Nick’s case will be taken before the tumor board for review. This is a group of oncologists and other doctors that meet to discuss a cancer patient’s case and possible treatment options. The next tumor board meeting will likely take place next week. I don’t think it’s exactly what Nick’s oncologist had in mind for this meeting, but he did say this might be the only way to get the minds together at the same time.
From our side, the only other thing is to have HLA typing done.
HLA typing info: Human leukocyte antigen (HLA) typing is used to match patients and donors for bone marrow or cord blood transplants. HLA are proteins — or markers — found on most cells in your body. Your immune system uses these markers to recognize which cells belong in your body and which do not. A close match between your HLA markers and your donor's can reduce the risk that your immune cells will attack your donor's cells or that your donor's immune cells will attack your body after the transplant.
This information is from www.marrow.org if anyone wishes to check the site out.
Nick, Kacie, and I will have HLA typing tests done on July 22. The purpose of Nick’s HLA typing is to determine what type of marrow would be the best match. Kacie’s HLA typing test will be used to determine if she is a match for Nick. She is the most likely family match to Nick. The purpose of my HLA typing will be two-fold. One: There is an outside shot that I could be a match. Two: My HLA typing test can help to determine the best match for Nick. I’m not sure of the in’s and out’s on exactly how my part works, but the doctor does and that is what matters.
Several of you have asked about being tested for bone marrow compatibility with Nick and being a possible donor. I asked the oncologist about that today and he said that we are not at that point yet. I will let you know when we get there, if we get there.
There are so many prayer requests in this update. There are also many praises.
I am praying for God’s will in Nick’s life, clear and concise discernment in the decision making, and for God to surround the doctors involved in the decision making. Another prayer I’ve been praying is that Nick will be open to hearing not only me and the doctors, but God’s still small voice too. I want Nick to KNOW what God’s will is for his life, not just what I want or what the doctors think is best.
Please continue to pray for Nick and our family. I am not telling Kacie right away about the need for her to give some blood for testing. She gets VERY anxious when needles are involved. Pray for Kacie too. Any path that Nick’s treatment takes is going to be difficult on her. Pray for me. I’m very tired emotionally. It’s been a long, hard journey to this point, and it doesn’t seem to be getting any easier.
Contact me with any questions. I will do my best to find an answer.
As always, we remain...
In His Grip,
Kristy Baxley
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