Wednesday, November 16, 2011

The "What"...

We came into the ER over the weekend because Saoirse was throwing up, and not able to keep down much food or water, and some of her meds. We wanted to make sure her labs were ok, and get her a quick bolus of fluids to tide her over. They drew cultures, because that's what is standard, and looked at her labs. Her labs looked great, her blood pressure and heart rate were perfect, and she sounded fine. They thought it was probably just a little tummy bug and that it would go away soon. We brought her home that night, and hoped that the throwing up would stop the next day. 
The next morning she still wasn't herself. She kept down her food and her medicine, but she was very clingy and didn't want to be by herself. After a couple of hours she threw up again. Now I was nervous that she was having some sort of brain pressure causing the vomiting from the tumor sites that we now knew were in her skull. We put a call into the doctor, and they said to see how she did for a little while, and call if she threw up again. Lo and behold, she did, and we were just going to call when they called us. 
The ER called to inform us that her blood culture was growing something and that we had to come back in right away to start antibiotics. We were going to be admitted. We were relieved that we had an answer to her vomiting, and were glad to get antibiotics started. We were hoping to be in for a day or two at most, and then take her home before figuring out what to do next about her bad scan. 


Saoirse seemed to perk up over the first two days. That night, after getting meds and fluids, she ate some dinner and played before bed. The next day, she had a bit of a rough morning, but after some blood, she perked right up and went to play in the playroom and walk around the halls. She was having a blast until she ate too much for dinner, and got very sleepy. The only problem was that she was still throwing up at least once a day, usually at bedtime or first thing in the morning. No one had a good answer for why she was still feeling sick, and thought it would have more to do with her new tumor growth rather than the bug she was fighting. 


We started talking about the next step. Everyone agrees that radiation is the way to go to kick it down quickly, and hopefully get it back under control. Her MIBG scan is set for Thursday, so we will find out then if there is any minute activity in her body (as her CT of her body was normal), or if it truly is all localized to her skull. We are hoping for the latter, and keeping our fingers crossed. We started contacting the doctors at Sloan to see if we should be trying to get down there for radiation. We had already met with the radiation oncologist there, and felt like she might be able to do a better technique than what they typically do here in Boston. Also, they do radiation twice a day, where as here they only do it once a day. We planned on meeting with the radiation oncologist here, Dr. Marcus, just to see what the schedule would be like and what could be done the quickest, and the best way for Saoirse. Initially, Dr. Marcus didn't think that she would be able to start radiation even before Thanksgiving next week. To us this was not an option. We felt like it was urgent to at least get things rolling by the end of this week, and start radiation at the latest on Monday. With this information we decided that traveling to NY would be the best option, if they would be able to get her started sooner and get the radiation done twice a day, meaning it would all be finished sooner. 
However, a few hours later, Saoirse's team came in and asked if we wanted to start radiation planning the next morning. We were confused at this, because the last we had heard, there wasn't going to be a possibility of starting even before Thanksgiving, and we had kind of settled our minds on being transferred down to NY. They said that Dr. Marcus basically rearranged the entire schedule for the machine needed, and had gotten a team together to get her started with planning Wednesday, standard radiation Thursday and Friday, and brain sparing radiation as early as Monday. She had also arranged for her to receive two treatments per day, instead of the one that they usually do. This was astonishing to us, and we were just so shocked we didn't know what to do. We said that we would do her planning, so we didn't lose her spot, but we still wanted to talk to NY in the morning and see if it was really better to just stay here. 
Mike talked to the fellow in NY, as Dr. Wolden wouldn't be in until later, and got some answers, but not definitive ones. We went and did the planning, and learned about what exactly went on as far as the radiation, and talked about how quickly they were going to be able to set up all of the treatments and the brain sparing plan. It was truly amazing how much work they were doing in order to get it together for us. We were very humbled and appreciative. After speaking with them, we really felt like it would be best to stay where we are as long as the technique really was the same, and according to both Dr. Marcus and Dr. Wolden, it is the same technique. We decided we needed to stay here and get things done. What they are doing for us is amazing, and we are so very glad that they are able to work so quickly for Saoirse. It makes us feel like they understand how important it is, and how important it is to us to have her healthy as soon as possible. 


We can see the bumps on her head getting larger, and she has pressure behind her left eye. It is not a drastic as when she was first diagnosed, but it is definitely pushed out a bit. The veins in her head are going crazy, it seems like there are more of them each day, and that they are darker. I have asked about anti-angiogenics, but they will inhibit the effectiveness of radiation, so we can't use them yet. I hope to use them after. Her planning went smoothly and quickly, and we are set to start radiation tomorrow. She has an MIBG scan in the morning, which they are going to sedate her for because of how she is feeling, and the fact that they need a good scan. Then she will receive the first dose of radiation in the afternoon. She will have two rounds on Friday, and also on Monday through Wednesday next week. We will start chemo hopefully Friday, and hopefully be able to coordinate it so that we can go home over the weekend and just have the nurse come to run the half hour IV drug for the two days (the other drug is an oral). We will know more about that tomorrow. We just hope that the radiation starts to work quickly, and that she gets some relief right away. She is just so uncomfortable, and I wish I could take it all away. Fingers crossed. 


We will be starting some research on what to do if 1) the radiation doesn't work, and 2) if it does, where to go next. Now she will not qualify for some of the standard treatments, but in some ways we have more options because a lot of new treatments are used on relapse patients first. There are a couple of very promising ones, and a couple of really alternative (but still promising) ones that we are looking into. All in all, there are about 4 or 5 that we will be researching over the next couple of weeks. Hopefully we will find one that will be the perfect fit, and hopefully it will be a non toxic option. Fingers Double Crossed! 

19 comments:

  1. I have a 17 month old in Andover and we feel like we're right there fighting this with you. We're praying that Saiorse gets some relief and a chance to be a happy toddler quickly! Thanks for the updates, you're doing an amazing job with all of this.

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  2. Praying that she, and the rest of you get a good night's rest and you can face this new set of challenges with renewed energy. She has so many people praying for her, God just has to listen

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  3. fingers double crossed that very soon all that will radiate is her incredible magical smile. we are thinking of you in New Paltz. Carla and Pablo Davidoff

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  4. I pray every day for you and your beautiful little one. God's love is always with you. With love I offer a passage from the Bible that has sustained me in times of trouble: Roman's 8: 38-39 "For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord." You and your husband must be very special people for Him to entrust you to love and care for this precious child. I pray that He gives you the answers you seek.

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  5. I really don't have the words to express how admirable you and your husband are. I can only say that I pray that your daughter gets better soon and that courage and faith never leave your side during this difficult time. Keep believing and keep trying, she will get better soon.

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  6. You are amazing mother! I admire you and your strength and wish you even more courage and strength. This is a bumpy road for your family, but you will win!

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  7. You're such a brave woman. I pray for both you and Saoirse to get better soon. Saoirse is so beautiful and yes, she did look likt her costume for Halloween. You have love from me and my two daughters.

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  8. Saoirse is a brave warrior. We are praying nonstop for strength for both you and Saoirse. Saoirse is such a special girl, she has truly changed my life. She's changed it so much that instead of Christmas gifts this year, we are going to donate to your family. With love, The Jones Family.

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  9. Betty Darmohray from Biloxi, MSNovember 17, 2011 at 9:40 AM

    Kezia - Thank you for the updates as I know it is difficult to find the time do these with so much on your plate. I am hoping that Saoirse will feel better by Thanksgiving. I know that the holidays this year will be tough, but try and enjoy them and those close to you. Prayers daily for you all.

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  10. Kezia I am so sorry to hear that your family is going through this horrible ordeal. Please know that me and my family are praying for a positive outcome. Keep the wonderful positive outlook you have. Love and prayers to you and yours! Xo

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  11. If you haven't checked it out yet, look up The Gerson Therapy. It's an alternative cancer treatment that has a high rate of effectiveness. There have been a few documentaries on it, including the Gerson Miracle. I hope this will add to your options as you consider what's best for your little one. :) Praying in Portland, Or.

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  12. This morning Maya Thompson posted a blog about fundraising for her foundation.. and in it, she just happened to list two doctors who have different treatment plans from the norm. Its not much but maybe they would be a good jumping off point... Their names are Dr. Giselle Sholler and Dr. Yael Mosse. Im sure if you have more questions you could contact Maya. I'm not sure that you know of her, but shes a cancer mommy too- her son passed in May of this year. Maybe she will knw something I don't. LOVE to all of you <3

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  13. I don't know you or your family at all, from anything, or anyone. I ran across your story on CNN a few months back, and just recently located this blog. I don't know what to say. Nothing seems adequate. I don't remember who said this, but someone made an analogy of life's trials and our responses to them to the work of a blacksmith/metalworker. They said that the metalworker knew the steel he was working was strong enough only when he could see his own reflection in it. God is certainly putting you through a refiner's fire. But I know He's not going to leave you in the flames until you splinter from the heat and the pressure. You are an amazing example of love, faith, and courage. I will be praying for you and your beautiful daughter daily.

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  14. Thinking of your family and sending healthy vibes today, as
    I've done every day since reading your story. Saoirse is beautiful, and so blessed to have you and your husband as parents,

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  15. I'll be praying for you and Saoirse. I'm sure everything will be fine.

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  16. Your daughter is an inspiration. When I feel bad about something, I think about the courageous battle that she is fighting and realize how little my own worries are. I am praying for her, and your family, all the time. I can only imagine how difficult this must be. I hope sharing your story helps you to cope.

    May God help & protect your beautiful little angel....Diana from NH

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  17. So glad that the hospital there is willing to work willingly and hastily with you
    To stay closer to home will be so nice especially knowing that the
    treatment will be the same. Praying that the radiation will work well for
    your precious daughter .

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  18. Thank goodness for doctors and caregivers who truly do care. I'm glad you'll be able to get the treatment in Boston. Big prayers that the radiation is already shrinking those dreadful tumors.

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  19. I want you to know that I too think of your family daily and pray often for strength, healing and courage. Know that your family has been an inspiration to me.

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