Update on Jax
31 Mar 2011 Leave a Comment
Hello to all my prayer warrior friends. I believe with all my heart that God is honoring all of our prayers in the name of baby Jax. We had our 10th month of chemo yesterday and Jax has gotten to be one tough little booger. Every time he has treatment, he has to go to triage first to check his blood pressure, oxygen level, temperature, weight, height, head circumference, and get his finger pricked to check his blood counts. He does so great with all of it. Yesterday, he didn’t budge when Ms. Faith pricked his finger. And this is not just a little finger stick, she has to push on his little finger to make sure she has enough blood for his CBC. So little Jax just sat there and watched every move Ms. Faith made. He watched each blood drop into the tube…he is like his mommy and would rather see what is happening to him instead of looking away. Once we were finished, we had to go to the play area to wait for a room to open. He was a little social butterfly. He waved at all the nurses walking by and was very interested in what all the other kids were doing. This tells me that he is growing up. He used to never really have anything to do with other kids except for his brother and sister. When we got to our room, Jax was very patient. He put on Nana’s lipstick and ate snacks. Both Dr. Momin and Dr. George looked at him yesterday and said he looked great. His liver is still measuring the same but other than that, he has no lesions anywhere. His scalp and his underarms have also cleared up. So then it was time for chemo. Jax was a CHAMP!!! He has to lie down and I hold his legs while Nana holds his arms. He usually freaks out but this time, he just smiled at Ms. Elisha as she made funny noises to keep him distracted…..it worked. I am so thankful that he is getting used to this whole ordeal but it is also sad that he even knows what any of this is. So after treatment, I got him dressed and we were on our way. Elisha called yesterday afternoon with his blood results and they were AMAZING!!! They are even lower than last month. Jax’s GI specialist says that he believes that since the liver regenerates itself, the new good cells are taking over the old bad cells. And the chemo is killing out any of the extra histiocytes that his body is making so the lesions are slowly going away. This has been our prayer from the beginning. Dr. George told us yesterday that he wants Jax to do chemo until August instead of July. He has to be on maintenance chemo for a year and that will be in August. He is going to do his scans again in July to make sure everything still looks good before we end treatment. Dr. George did say yesterday that he will not be surprised if Jax’s LCH flares up a few months after treatment. Jax was sooooo sick (a lot more than we realized) and so little that he thinks it’s gonna take more than one round of chemo to get rid of the disease completely. He did also say however, that if he has to go back on chemo it will only be once a month and not every week like we thought. So overall, we feel like all of this is good news. Does it still suck? YES! Do we still have to pray that his liver gets better once treatment ends instead of worse? YES! But we are confident that our little boy is going to come out of this okay. That is not something I could’ve said at the beginning of this journey. I had faith but I also had to be honest with myself about how sick Jax was. His GI specialist said that if they didn’t figure out what was going on with him, and get it fixed quickly when he was in the hospital, he was on the verge of needing a liver transplant. He was REALLY sick. I am so thankful that we figured out what was going on with him when we did because his liver couldn’t have taken much more. God’s timing is PERFECT!! I write all of this for a lot of reasons but one of them is to let everyone know how he’s doing and what specifically to pray for. Right now we are praying that when he ends treatment in August, the disease will stay in remission and his liver will continue to heal. Thank you so much to all of you who keep up with our story. There are days when I feel discouraged and just flat out mad and alone. And it’s those days that we get a card in the mail (which are all displayed in Jax’s room) or a special gift for him and it reminds me that we are not alone so thank you. From the bottom of my heart……thank you!!!
