Second guessing

I feel like the Tasmanian devil today. It’s been a whirlwind of zipping around my house getting things done, researching on the internet, talking to people at CHOP in Philly, Sloane-Kettering, homework with the boys, getting Quinny to the doctor(thankfully Woody took him) for a sinus infection, and taking care of Ronan. A busy day to say the least. I’m trying not to second guess anything, but I want to make sure we have all of our bases covered. I can’t look back at anything we are doing with Ronan and have any regrets. I really do feel like we are in good hands at PCH, but I still have to put my feelers out there to be sure. I am just feeling unsettled tonight. I want proof that what we are doing is working. I am trying to be patient but it is becoming harder and harder everyday. I feel like every success story I am hearing involves Sloan-Kettering. But it is so hard for me to imagine taking Ronan away from our home and his brothers. We will cross that bridge when we come to it… I just need to sit back and settle down. That is actually bullshit. Sitting back and settling down is not going to fly anymore. I am his mother, he is my baby boy, I need to know everything possible is being done to cure him of this disease. For good. In the meantime, I will be doing everything and anything I can to reassure myself that we have made the right decision. I feel a little better knowing that Woody has been in contact with Dr. Kushner at Sloan. He has been so great about talking things out with Woody. So thankful for that. I can’t even get Dr. Maris at CHOP to return my phone call or email me back. I will be sending him Ronan’s info as well.

Ronan had a good day today but I can tell his levels are starting to drop. He was a little less active and pretty clingy. He slept a lot today and this evening he had a slight fever. It’s gone now but I will be watching him like a hawk tonight. We go into the clinic tomorrow morning to have his blood levels checked and his Broviac dressing changed. UGH. We had a lot of quiet time together today and tonight. Liam and Quinn had basketball practice so Ronan and I played outside while they were gone. Well, not so much as played, but sat in a chair and enjoyed the cooler weather. We watched the clouds roll in around us and I prayed out loud with Ronan for him to be healed, forever. Then it started to rain on us. We sat and let the rain drops fall and I told him they were washing away his owies. He agreed with me and giggled. We watched “Earth” again tonight and after about 20 minutes he asked me to turn it off because he was tired and wanted to go to sleep. He is out like a light now getting the rest that he needs. We have a busy day tomorrow at the clinic. I’m beyond beat but I know that I won’t get much sleep tonight. One day I will enjoy my sleep again, but not now. Too many nightmares and to many things to keep me up at night. Goodnight to all of our angels out there. I hope to see some of you at the baseball game on Saturday!!

5 thoughts on “Second guessing”

  1. Dear Maya,

    You and I have never met, but I’ve met Woody once a long time ago, right before I was married to Charlie’s nephew, Philip.
    I know you have a lot on your plate and are trying to consider all the options. So, I wanted to suggest that you also look at St Jude Hospital. As a cancer researcher, I’ve heard some amazing success stories about that place. Pediatric cancer is all they do and are considered number one in the country. Also, if I remember correctly, once a child is accepted as a patient, the hospital offers financial assistance to help parents afford the long-term treatments.
    Please email or call me if there is anything at all I can do to help! Reading your blog, I can tell that Ronan is an amazing little boy and I wish you all the best! I think he can beat this awful disease!

  2. Remember, Maya. You are in good hands with a team of people that will be your second family by the time Ronan is finished with his treatment. And that relationship will last for years. Beyond the cancer. You and Woody are being wonderful advocates for Ronan. Remember, the choices you have for Ronan are all tough choices. I think you will be surprised to find how well the tumor responds to the chemo, and when they do another scan it will have pulled away from the vena cava and aorta. Once you have proof that you are winning this battle, you can make better decisions. Sounds like you have all your options into play. Waiting is the hardest.

  3. I am blown away about your “rain” comment! Last night at church some people went forward for healing prayer. As we waited I prayed and sensed the Lord saying His mercy is falling and healing them. AND now you are talking about the rain coming down and being healed…hmmmm…I know the Lord is directing all of this and He has wonderful plans for Ronan. I am praying for all of you to keep that hope in the Lord to get you all through this very hard time. I pray this is encouraging for you to read.

  4. When I had my cancer I just wanted the Lord to do all the a miracle…but instead He wanted me to go through the process of allowing the doctors to treat my cancer. This is the submission I needed to learn to trust the Lord and others that He had placed in my life.

  5. Know that right now you are doing the right thing..Ronan needs chemo and he is getting it (that can be done anywhere) he is you are being proactive and looking into all the other options for all situations. I know that the scan will show exactly what we all know and wish for but in the meantime no mother is going to settle for one avenue..they always have 5 cards up their sleeve You will know shortly and know that your research will eventually give you some peace at the right moment. xo

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