Yesterday was a long day.
With hopes of high numbers we were off and running to Centennial Medical Plaza to be there when the lab opened at 7am. Yep me and both boys were up in the early AM, an arena of the day we do not function very well in.
Then it was back home to feed the boys and get Joshua off to school.
Once we had Josh off to pursue his education, Jacob and I headed to the church to start the Crock Pot Beef Fajitas. This recipe and all the prepped food was from Delectable Dinners - if your schedule gets crazy and you still want to feed your family (or your Alpha group) a great, healthy, delicious meal - then you need to check out Delectable Dinners! Thanks Dawn.
Next it was back home to squeeze in a much needed shower before calling the clinic to see if our numbers were high enough to start back on chemotherapy. As I spoke with Grace (one of the many awesome woman at the oncology office) on the phone, I learned that his numbers were to low to start chemo and that the white blood cells had been suppressed long enough that we needed a bone marrow sample to verify exactly what was going on. The hope was the marrow would verify that it was simply his immune system taking a while to recover after a viral infection. The fear was that the marrow could be again making Leukemia cells.
So as I dragged a comb through my dripping hair (good thing I am not a high maintenance girl) I raced down stairs to give Jacob the Valium and the Emla cream that would help to mitigate the pain. We have done bone marrow biopsies before - in day surgery under general anesthesia - but never in the clinic and never in my presence. This is the exact reason I am so thankful that many of you are praying for Jacob on a daily basis - yesterday we needed to be before the Father.
Arriving at the clinic we went through the normal start up procedures - access the port, do CBC, receive a nice amount of fentanyl - and then get ready for the bone marrow biopsy. Done in the clinic it is very similar to a spinal tap, they insert a needle into the vertebrae to access the bone marrow. There is a local given prior to the biopsy to help manage the pain. The pictures below show what the procedure looks like.
Jacob did amazing as the Doctors and Nurses worked around him, holding still and giving them the perfect field to work in. As the pain grew he would say through his tears, "Squeeze harder! Momma, Squeeze harder!" Once the needle was placed there were several looks back and forth between Dr Odom and the nurses, because even though the needle was placed properly there was no bone marrow coming out. Some times the marrow is so packed that it can not come out of the small needle. Unfortunately - the picture below shows what the next options is.
When they can not get marrow from the vertebrae, they have to go to a larger needle and the hip bone. When I say bigger - think the tine on a fork. This is usually done under sedation and Dr Odom said that it has never been done on a child as young as Jake with only a local. In his own words it was the most painful thing we have went through and is probably the hardest thing I have ever done. This time they had Jacob lay on his side and bring his legs up towards his chest. First was an additional dose of Fentanyl and the administration of more Lidocaine as a local. Then Jacob and I held hands. HARD!
Part way into placing the needle the pain was bad enough they had to stop and administer more local and even after that the pain was ...
- intense
- Severe
- 10.5 on a scale of 1-10
- unbearable
And again, Jacob stayed perfectly still as they placed the needle in the bone. Superhero is an understatement.
Jacob and I held hands hard enough that minutes after the biopsy he still had my fingerprints on his hand.
Words really can not describe how painful it was for Jacob - or how hard it was for my Momma's heart. There is a reason parents are not allowed into surgery. I must say again how awesome our entire medical team is. Dr Odom, Susan and Shay took an incredibly challenging situation and walked us through it with amazing skill, ability and compassion. 6 months ago - you would never be able to convince me that we would survive that situation. Yesterday - I think we made it through with flying colors.
Yesterday evening Grace called with the preliminary pathology and the bone marrow showed a suppressed immune system but no Leukemia cells. This is the information that not only helped us to sleep last night, but that we had been praying for.
GOD IS FAITHFUL!!!Today was also a long day. But not near as hard.
We started the delayed intensification stage of chemotherapy. Jacob had his first dose of Doxorubicin (3 hour IV chemotherapy) today and we are praying for no complications and little side effects. Today is day one of 56. I am sure there will be a variety of ups and downs but we are going to hold onto the promises of God as we walk it out.
Please, continue to pray for Jake.
Today, we made the donuts!
