Today was our first day of what the treatments should look like from here on out. Let me tell you it’s an early day! I am so busy from the moment I wake up till I crawl into bed. I was thinking tonight nursing the baby to sleep what a gift that actually is. I miss my friends and my Real Housewives watching time but I am so thankful for not having too many quiet moments. What will I do with myself when all of this “busy time” is over? So I guess its another thank you to all of you reading and supporting us for keeping me busy.
We have to do be in the waiting room at 7:15. She is the first appointment of the day. Again everyone was amazing with her…and me this morning. Last night we baked some gluten free cupcakes and she wanted to bring them in to share with drs and nurses. She makes me so proud. She was still a bit nervous today when she had to go to sleep but not nearly as bad as yesterday. For me though it’s still so jarring to hold her body as it goes limp in my arms and lay her down and walk away.
In recovery I told her that we could go to the mall for a bit then come back for her appointment with her oncologist. She asked what a mall was?!? yowsers My sister aka Auntie was on Charlotte duty today. Charlotte duty is for when I am in recovery with JLK and can’t have the baby I need somebody to snuggle her. My family made a calendar and filled up every day for the full 6 weeks. I knew it would be helpful to me but I didn’t realize how much it would help Jennifer. Tonight at bed she asked who would visit us tomorrow (its Uncle Eric if you are wondering) …When we were waiting for her MRI then diagnosis we were gearing up for me to have long days/times in the hospital with chemo etc…so talking about getting Charlotte to take a bottle and be without me. I was so sad about that….But now with this tumor that’s not a worry anymore. Hindsight is an interesting thing since I wish so much to be apart from her fighting a very different fight.
We got some food at the cafeteria where we found a few high protein gluten free shakes and snacks. I have been told quite a few times to be sure to get protein and fat into her so I am glad its easy to get at 8:30 in the morning. As we drove to the mall she said she wanted to get something for Fairy. She came up with the idea all on her own. All she really knows is she is hanging out with Fairy a lot lately…but on some level the work that her godmother is doing for her is sinking in and I am happy she wanted to acknowledge it…with huge garish sparkly matching necklaces. She was so proud to give it to her this afternoon. And since she’s no fool she quickly added that she wanted something for herself also. Auntie delivered!
Soon though the tiredness was setting in. We had our umbrella stroller and she crawled in and fell asleep. Before that at the store I had a moment. They were doing fundraising for St. Judes. They asked my sister if she wanted to donate. I shed a silent tear and pulled it together to take her to buy her gift for Fairy (and herself). They didnt ask me if I wanted to make a donation. They had noticed that we were the faces of St. Judes. JLKs port is what they call accessed, meaning the needle and tubing is attached to it and its fairly noticeable, I am guessing that and her hospital bracelets gave it away. When those St. Judes commercials would come on I changed the channel…it was just to painful to see so I shut it off and walked away. I wish I could do this now. Decide its too hard and make it all go away with the click of a remote.
After her nap we went back to the hospital for her oncology appointment. She actually really likes these drs as do I. And guess what….they are seeing some progress and stability! The DIPG tumor is a fast growing one so this is great progress. Radiation is to possibly improve and hopefully pause her symptoms.
****I interrupt this journal for some adorable breaking news*****
I heard what I thought was Jennifer crying in her sleep so I went in to snuggle her. But she wasnt crying only talking. She was saying “oh bubbas (her nickname for her youngest brother) wheres Mama” She is happily dreaming about being home with her brothers <3
*****back to your regularly scheduled journaling****
Her social worker (who is also the bomb.com) let us know about a Christmas party the hospital throws for the patients and their families. I am especially excited about the sibling appreciation that is part of it. And I know Jennifer will be happy for that too and to show off her little brothers. She misses them so much. She asked over and over again to go home tonight. I think I need to make a calander for the weeks to count down the days til the weekend and to let her know the schedule since Mondays and Wednesdays will be a bit different.
After her appoinment we had to go draw blood for labs. Another benefit of the port is that they dont have to poke her to draw blood they can put “tube to tube” and draw that way. For some reason though this was a really scary moment for her. She was crying and shaking even when they started and she saw it didnt hurt. She shared during bedtime that she was scared they would take all of her blood and she wouldnt be able to play anymore. Every time I try to prepare for what she might be thinking/feeling glimpses into her mind like this throw me. I just have to learn I cant be ready and I just have to do the best I can with my explanations and talking with her.
By the end of this it was a little after 3. A very long day for us girls. We headed back to have some relaxing time before a short play date with one of her friends who had a bag full of clothes for Charlotte who had either outgrown or out pooped all of her jammies. Seeing a friend really did her some good because although she was tired and so very homesick she rallied. I made her a box of her gluten free mac and cheese and served the whole box in the biggest bowl I could find since I knew she would get a kick out of it.
She did some face time with her brothers and Daddy, so did I. (It’s adorable, here’s the video…IMG_2605 (1) Then had some alone time with her Fairy. Lucille Packard has a great program called Beads of Courage. They have a huge list of courageous acts kids fighting cancer do…everything from blood draws to mobility challenges to radiation. Jennifer took to this physical symbol right away and we always fill in her bubbles on her count card and show it at appointments to get her beads. I wasn’t privy to the whole conversation but they sat down together tonight and added the beads she had earned over the past 2 days to her necklace. And they talked about the things she had done that showed her courage. But instead of using the ones Stanford had written they talked about the things that were personal to JLK. This is all so big and little by little I think she is starting to absorb the enormity of it all…and hopefully since we are sheltering her and doing it little by little it won’t be so overwhelming.
Tomorrow should be a fast day…in and out then off to San Jose to see her brothers at the Discovery Museum!!! Cannot wait to hug those goofballs and see my 4 kids together again.