Erik came over this morning to watch Raven so I could go to the doctors office. I’m almost 19 weeks now and a few weeks ago I got a call from my insurance company to participate in a free healthy pregnancy program. I spoke with a nurse who told me that it would be beneficial for me to have progesterone shots weekly because I went into preterm labor with Raven and it would prevent me from doing the same with our baby boy. She said she’d fax paperwork over to my doctor to get things started. When I met with my doctor this morning, I asked about the shots and the paperwork and he told me he had received it and gave me a prescription. He told me once I got it filled we would start with the first shot. I’m kind of nervous because I don’t like needles but I’m also relieved because I do not want a repeat of last time.
When I got back, Raven was sitting up and being really cute with Erik. It was awesome to see. They are really adorable together. He gets her to make goofy faces and do cute things. He always has and I love the bond that they have.
A few minutes after I got back, her doctor came in to check out the infection site. Yesterday we met with an infectious disease (ID) doctor who took a look at the site and was consulted about the antibiotics she’s on. Raven’s doctor said that the ID doctor said there might be an abscess but couldn’t be sure but he was sure that after looking at it this morning it was not there and that she did indeed look like she was healing. He also said that she’s been on the IV antibiotics for six days and he would just continue with them because it did look like it was doing the job. Raven is still pretty tender which he said was to be expected but overall he is very positive with the way she is progressing. Her ANC was over 4,000 yesterday and her white count was up too which was good. She did have to have a blood transfusion though because her hemoglobin was very low.
The new plan for us is as follows… Monday, or Tuesday depending on availability of anesthesia, Raven will go in for her LP and bone marrow biopsy and will essentially bypass the waiting period in between induction and consolidation. Typically it is about a week in between but because she is already behind, she will just go straight into consolidation. She will officially start consolidation and to be honest, I’m not sure how many chemo medications she will then be on. From what I remember, the first day of consolidation is supposed to be pretty intense so I guess we’ll see what happens. The doctor said the only thing that may differ is the bone marrow biopsy depending on how the infection site looks on that day but he thinks by then she will be okay to proceed with both.
Technically, he said that they cannot do the MRD (minimal residual disesase) testing the same way they would have had she had a normal day 29, but that once they do the biopsy they will assess how much cancer is still remaining if any. I know when people hear remission they think everything is fine and the patient is healed. That’s pretty much what I thought but it’s not like that at all. Cancer is a tricky thing and it isn’t one of those things where you can’t take just one reading and know that you are good to go. You have to continue treatment to make sure that it cannot go and hide somewhere else in your body or just come back because you stop treatment. It’s kind of like when you go to the doctor and he gives you antibiotics for ten days but you stop taking them after three or four because you feel better. While you may feel better now, you could end up getting sick again and even worse because your body did not fully get rid of the bug making you sick. Only difference is cancer is a much bigger “bug” which is why she will be receiving treatment for so long.
Overall though, Raven, Erik and I are in good spirits about everything. We know that there will be bumps in the road but we are adjusting as best as we can. We are just relying on her doctors and our faith that she will heal completely.
We did have a few cute things happen in the past few days. The day before yesterday, I met with another mom whose son is 7 and has ALL. He also has Down syndrome and it was nice to kind of compare stories and get to talk about how our kids are doing. It’s nice to know that I have someone to talk to who is a little ahead of Raven and it was nice to see her son too. He looked so good and it was good to see that he was playing with his iPad and having a good time.
Yesterday, my friend Jenn came over and brought over some gifts from a friend of hers in Virginia. I still cannot get over the fact that total strangers want to send their love and support to us the ways they have. Her friend bought Raven some really cute outfits and some Dora the Explorer movies. When Raven saw Dora she lit up and smiled and said “Dora”. Too cute.
To Jenn’s friends Corky and Heather- thank you so much for the gifts! We appreciate them so much and I know Raven will look adorable in everything you sent. She already loves the videos. She’s watching the enchanted forest one right now as I type. Thank you again.
Raven's Journey 