3 months, 2 weeks 3 days since diagnosis
day #1 of current hospital stay
days until transplant - 9
The last week has been amazing. Riker was home and we were a family. I soaked up every last minute of it and didn't even take a moment to update everyone. The last week has felt almost normal. I was pleasantly surprised to find out that Riker really likes being home. She may have spent over half her life in the hospital but she still rather be at home :)
The best part was watching Valentine and Riker together. They really adore each other. All Riker has to do is look at Valentine to start giggling. Valentine didn't want to leave Riker's side all week. When Riker would cry (which was rarely), Valentine would cry out, "Riker, I'm coming. Riker it's ok, I'm right here!" They break my heart!
Although it was almost normal, there were still reminders that I have a sick daughter. While home, I had to administer IV antibiotics every 6 hours. The antibiotic ran for 2 hours and during that time, I had to carry around a baby and a pump. I had to set my alarm for 3 am and get up again when the pump alarmed at 5 am. I fell into the pattern easily and happily did my part to have her home.
Now we're in Boston. After an exhausting 12 hour day, waiting for hours for a room to become available, we are settled in Boston Children's Hospital. Riker is sleeping and starting her anti-seizure medication. I guess the chemo can cause seizures. The chemo will also likely cause mouth sores, horrific diaper rash, fevers, high blood pressure and other undesirable side effects that I will be helplessly watching. I'm glad I'm finally here but I'm scared as hell.
When I said goodbye to Valentine, she told me she didn't like me anyway and I should leave her alone. I know that she's just confused and sad and angry but... I still wanted something else from our goodbye. I cannot believe I have to be so far away from her. I cannot believe that I will see her so infrequently. She's supposed to come this weekend for a visit and we'll visit the aquarium. She'll be here next weekend for the transplant. I will get to see her but it's not enough. Skype is not enough. I already miss her.
So here I am. I didn't think I could ever make it this far and I did. Now the toughest road is still ahead and I have to be even stronger. I will make it through this for my girls, my husband, myself and my family.
Your post brings tears to my eyes. Being away from my older daughter for a week is tough enough; I can only imagine the heartache you must feel to be so far from Valentine for so long.
ReplyDeleteAll of what you're going through is so scary and tough. Although we've never met, my family and I follow your journey. Since Riker was diagnosed and you jointed the fb infant leukemia group, it's amazing how much you've learned and how far your whole family has come. And it sucks that you've had to learn what you learned.
Know that we're all rooting for you!
All the best,
Liz and Molly
Hello Tory,
ReplyDeleteOur prayers continue to be with you at this difficult time. Hello to Jon, and good luck to Valentine with her donation. You've gathered strength to endure up to now and we send you the strength to keep going.
Love and God bless,
Gloria