November 17, 2016

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Maintenance Day 587: Celebrate!

Today was Scarlett’s last dose of IV chemo and last lumbar puncture. When she was diagnosed, it seemed like this day would never come. I never wanted to think about it because I was too afraid. Two and a half years seemed like so long.

We began the day delivering cookies. Seven dozen cookies was such a small gift to the people who had done so much. We gave orange and gold ribbon cookies. The valet staff, who were much appreciated on those cold days when nothing could warm her up and have always asked how she was doing. The pharmacy, who I of all people, appreciate so much. We never questioned her doses, never waited long for her meds, and they searched all over the state for Alinia during her last hospital stay (and even sent the extra doses home with us). The 10th floor…I can never say enough about the 10th floor. They have been so accommodating, so caring, so wonderful. Some have held us as we cried, brought special little treats (or a tiny little commode), fight each other over who gets to care for us, gave us comforting words, encouragement and silence when we needed it. They have listened to our worries, laughed with us, loved Scarlett, cried with us. They have become true friends. And the clinic staff…oh my gosh. We truly owe them everything. The nurses know everything that Scarlett wants – to open her band-aids, eat right after LP, use the orange wipes for deaccessing, hold Mama’s hand during LP. The Child Life department who has special toys set aside just for Scarlett’s LP, knows just what movie she wants to watch, that she wants an activity every time, and that she likes a lot of glitter. And the doctors. They literally gave her back her life. We have grown especially fond of Dr. B. He has respected us throughout the process – understanding our level of knowledge, deferring decisions to us, allowing Scarlett to be discharged early on multiple occasions, gave us his cell phone number and giving Brock “prescriptions” when we disagree on things (still not getting that falcon, babe).

With help from great friends, we finished our list of backpacks. It has been a really fun project. Some of my favorites have been the little girl that loved My Little Pony and the little boy who liked Legos. But my favorite was the little boy who dreamed of going to the Packer Hall of Fame with his dad. We were able to give him a backpack full of Packers gear and two tickets to the Hall of Fame. I spoke with Amy today and she said that the kids just love them. They get so excited that, not only do they get something special but it is full of things just for them. One family refilled the backpack and brought it to their next appointment to give to someone else. That is exactly what we hoped would happen – to start a chain of love and giving. To finish that list was a great accomplishment but we aren’t done. We will continue to fill them as we can.

Last night we told Scarlett that she would be getting her last butterfly today! She started crying. She didn’t want to get a butterfly at all. During the night, Brock found her on the stairs crying because she was afraid. The trauma of everything the past two plus years is hitting her now. She has also been bragging to her siblings that she isn’t going to feel her flu shot because she is going to get it while she has sleepy medicine. Unfortunately, the day didn’t go exactly as planned.

Her access went pretty much as usual. She cries, more out of fear than pain I think. Then she starts a craft. Today, she had a big sign that said “Today is my last dose of chemo!” Her check up went well. We have another unknown skin issue to deal with. Hopefully that goes away in the next few days. Otherwise, we go to the pediatrician or dermatologist while we have her deductible met. Everything looked pretty good. However, we spent quite awhile discussing the IVIG that she has been getting. We can not know whether her IgG level is in range because she is making it herself or because the IVIG is raising it. Her doctors would possibly like to continue that through the winter. Which means that she will not get her port out yet. We decided to check her IgG level today to see what it was and then make a decision. Since IgG “cancels out” the flu shot, we would decide which of the two she would get. The lab called to tell Dr. H that the machine that measures the IgG had just broken and they would try to fix it. It still wasn’t fixed when we left the hospital so we gave her the flu shot. Unfortunately, by then, her sleepy medicine had worn off. All of that bragging and “nanananana”s backfired on her big time.

We had planned and expected to have Scarlett’s port removed in about two weeks. We had told her that she would get her last butterfly today. We were wrong. We hope that at her next appointment, her IgG will be high enough to discontinue giving that. We hope that we can have her port removed before the end of the year so we can save a little money next year. We hope that her port can be removed as soon as possible so we can finally apply for Scarlett’s Make A Wish. We hope that her port can be removed so we don’t have to worry about fevers and line infections. We hope that we never have to deal with a port again.

But today we celebrate. It is a day we have been looking forward to and praying for. Our little Scarlett is DONE with IV chemo and lumbar punctures!

One thought on “November 17, 2016

  1. Marilyn Packmayer

    I believe today is your party, Scarlett!! Uncle John and I are with you in spirit and are praying for you AND cheering for you!!

    When we get back to Wisconsin we hope we can come to visit you or that you will come to visit us and to see your other twin cousins, Lysie and Lauren!! Along with William, Amelia and Miranda also, they love you SO much!!

    Best wishes today, Sweet Girl! We hope you received the present we sent! And we hoped you liked it!!

    We love you and miss you very much!!

    💕 Auntie Pudge and Uncle John

    Like

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