Because she had such high chances of leukemia we had been testing Natasha every few months to make sure we could catch it early. We had been planning Abigails Make-a-Wish trip to FL in November and decided to test Abigail one last time before we made the trip final. That was on September 8. On the 9th my pediatrician let me know that her blood looked good except for a low WBC count. She was probably fighting off a virus, so we could just test her again in a month.
When I mentioned that to the PA in oncology on Abigail's next visit he asked if Natasha had a cold or was running a fever. When I answered "no" he asked for permission to check her scores on the computer. When he came back he was very concerned about her ANC or neutrophil count. Normal is between 1.5 (still pretty low) and 7. Natasha's was .6 which is nearly neutropenic (meaning that she doesn't have much ability to fight off any infection). To put it into perspective, Abigail would not have been let out of the house with that ANC. He wanted her retested which we did about 5 days later. The only change was that her platelets, which allow her blood to clot, were declining rapidly and were now low. That was a Thursday. They scheduled her bone marrow aspirate for the following Tuesday. They tried to give us hope but kindly suggested that realism was in order. That was our conference weekend--waiting for the inevitable. At least we had time to prepare a suitcase and make arrangements for our kids. Telling them was a different story...
Natasha was officially admitted about 2 hours after the biopsy. They were able to confirm the leukemia quickly. By 9 am the next morning she was in surgery for a power port and she had her first chemo and steroids that afternoon.
Natasha walked into oncology that Tuesday with a huge grin. She was happy and giving hugs and kisses to everyone. She is naturally so sweet and loving that the staff quickly recognized how different she was from our little firecracker Abigail. That is part of the reason it is so hard for us now. She wasn't acting sick. She was busy, happy and adventurous. It's hard not to feel bad because we have made her sick.
She has steroids in her so she hates everyone and everything. She cries almost constantly unless she is asleep and Josh and I are so sleep deprived I see with a funny aura. I have wanted to post regularly but finding time seems impossible. Today I finally just handed her screaming to my husband and left. I needed a few quiet moments.
Even knowing what to expect, it is so hard. I love these sweet girls and watching them suffer brings almost physical pain to Josh and I. We have both had physical side effects and illness caused by stress that has been unavoidable given the circumstances. My greatest consolation is little Abigail who is only a few weeks away from "maintenance" which is a much less intense form of treatment. She is running, talking, playing and teasing much like she did before the cancer. But now she just seems to have an inner strength and confidence. She has been through so much that she is grateful for the marginal health that she does enjoy now. It's comforting to see that there is a light at the end of the tunnel. It's just another 8 months away...
We will continue to pray for your little girls and for you. Hang in there Mom and Dad. You've done it before and you can do it again.
ReplyDeleteWhat a rocky, rocky road. Our thoughts and prayers are with your family and little sweet girls.
ReplyDeleteJust catching up on your blog, I will be praying. We only had one child in chemo and that was difficult, I can't imagine what it's like to go through this again! I think of you often, your girls are beautiful!
ReplyDeleteWhat a journey this must be for your family! While I know what it's like to have a child with DS, I can't imagine having two that are battling cancer at the same time! Your family will be in my thoughts and prayers.
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