A new normal

I have used the phrase - a new normal - a lot the last few days. That is where we are, learning to live with a new normal. And that is ok - there are some great things going on in our new normal.

• Knowing that you have more people then you can count who love you, care about you and are concerned about you. Friends and family who are willing to do ... anything. Simply with the hope of helping you.

• The new normal has an intense focus on the importance of family and the relationships we have with others. It is so easy for life - the urgent- to rob you of what actually matters. Like playing catch with your son. Children who trust you, and like you and want to spend time with you. Laughing with your spouse. Speaking with a friend on the phone, catching up, sharing life.

• Realizing (really getting it) that the creator of the universe, Father God, intimately and actively loves us. His finger prints are everywhere in our life and He has been with us so faithfully through every second of this journey. He cares so much more about sonship then service and He loves us. We are his treasure.

• Our new normal has a growing knowledge and appreciation for the fact that today is precious and should be lived fully. Find balance. (Notice that even in the new normal I did not say I have found balance, it is the new normal not heaven!) The entire "to- do" list does not need to be completed today - sometimes building with Lego's is far more important then organizing your entire house.

Have you ever thought about how many times you are asked "How are you?" in a day? I never had till this week. This week I found myself having long awkward pauses after being asked that because I was SO not ok. There is no easy transition from "How are you" to "My son has leukemia." "Nice weather we are having!" does not easily lead to "Jacob has cancer." Eventually I started answering, honestly, with an I don't know.

Today, coming home from the hospital, Brian and I both realized that we could answer the question with, "I am good." We, like every parent in the world, would never choose this situation. Brian and I would gladly pay any price to take this from our son. But we are starting to see that our life is good. We are learning and growing and really finding out how to live the life we want with our focus on what really matters.

The clinic / hospital visit today provided us with some more good news. First and for Jake most important, re accessing the port did not hurt! Before leaving home we slathered him with some emla cream (numbing) and then sealed it in with Press n Seal. Who knew? At the clinic the first thing was a finger prick and Jacob was a little upset because it hurt - until he got to go to the toy closet and picked a small Lego set. After that was time to insert the (very large) needle into the port and Jake was squeezing our hands for all he was worth. Z, the nurse did a count of three and he freaked out a little on 3. Of course she had inserted it on 1 and he quickly calmed and said, "That didn't hurt. I didn't feel it." He is starting to trust that we are telling him the truth.

Dr Odom then gave us some good news and some news that raised a couple of question marks. First, the final tests of Jacob's spinal fluid confirmed that there were -0- leukemia cells in the spinal cord / brain. She also let us know that some early pathology on the bone marrow was confirming that the chromosomes involved were the kind that are favorable to treat. That news came with a bit of an asterisks - because they are also seeing an additional chromosome involved (one that is harder to treat) and they have not seen this combination before. These are early reports and as they continue to process the bone marrow they will have more information. For now - I know that God has seen that combination before - and we ask that you join us in praying that he continues to give wisdom to our medical team. We will know much more of what impact that will have on treatment when we reach the 4 week mark.

Next we went across to the hospital and settled in for the platelet transfusion. Any time they do a transfusion they give Benadryl prior - to limit any reactions. Last week Jake reacted to the Benadryl (when it was an IV push) by having the worst headache ever imagined. Brian said it was all he could do to watch him scream in pain until the Valium worked, and has since described it as the worst half hour of his life.

Well, today we had the IV push and because of the reaction last week they did it much slower trying to minimize the side effects. Minimize yes, eliminate no. Jake started fidgeting, moving, shifting, wiggling and Brian recognized that as what had been the start of his negative reaction. We quickly called the nurse and as she came in Jake was on one foot with his arms braced behind him and his other leg sticking straight out. Then came the cramps. How weird is it that Valium becomes just one of many of your go to drugs. The pain was intense enough that he was arching off the bed - but the Valium worked quickly and he was able to fall asleep for the rest of the transfusion.

Needless to say - we had it put in his chart that he is allergic to Benadryl via an IV push. Yikes.

All of his blood work from the day came back looking really good. His body has caught up and is processing all the waste from the chemo cells and his chem panel looks really good.

Tomorrow morning we will check in at 7 (yes - AM) to day surgery. Jacob will have a bone marrow biopsy, a spinal tap and chemo administered into the spinal fluid. Once he wakes up in recovery we will cross back over to the clinic and he will have a different dose of chemotherapy via his port. Once that is done, and we get the all clear we will bring our guy home.

Pray! Please keep praying.

We will post tomorrow once we are home