Back in the hospital. Boo.

I could tell yesterday that Ronan wasn’t feeling well. He started to act tired and was not acting like his active self. I took him to the clinic today and his counts came back on the lower end and his platelets had dropped to 28,000. We expected this, it means the chemo is doing it’s job. They said they would transfuse him if his platelets were under 30,000 so they did. We would like to avoid another bloody nose incident if possible. After the transfusion, he spiked a bit of a fever which is a big uh-oh around here. It could have been a reaction from the platelets, but it could be something else like an infection. His ANC (annual neutrophil counts) were at 0, which basically means he has no immune system at all. Because of the combination of the fever and his ANC being so low, they admitted him into the hospital. He was not happy about it but is too weak to put up much of a fight. While we were at the clinic, I stepped out for a bit while Mimi Kay sat with Ronan as he slept. I ran over to the Picu to visit my new friends, The Foutz family. Mia is fighting cancer, but a different kind than Ronan. I think she has had 4 brain surgery’s so far and she is only 5. I brought her a new Barbie, a Hello Kitty purse, and some cute Paul Frank pajama’s. I got a little smile out of that sweet little soul and that made my day. She is having another surgery tomorrow so PLEASE keep this little girl in your thoughts as well. I sat and talked with her dad, Matt for awhile who I LOVE. He is funny and cracks me up. He is a badass just like his little Mia. His wife, Sandra, is going to come up in a bit to visit. I have talked to her a few times and feel an instant connection. They are family now, a beautiful family and they will get through this just like we are going to.

I had a breakdown in the clinic today while Ronan was asleep. I hate seeing him not feeling well. My most favorite nurse in the WORLD, Sharon came into the room as I was sitting there crying. She sat with me and we talked for a bit while she hugged me tight. She saved me in that moment and I will never forget it. Today, I feel like banging my head against the wall and never stopping. I told Sharon that when all this is said and done, hopefully we will have raised enough money through Ronan’s Foundation that I am going to donate a lot of it to PCH. You know what I am going to donate it towards?? I am going to make them put in a padded screaming room somewhere in the hospital. With punching bags and everything. Why don’t hospitals have those?? They should be mandatory. I could have used that room today and I’m sure a ton of parents feel the exact same way. Fucking cancer. I can’t even talk about our roommate. If I do, I’ll crack. Let’s just say the spit has to be sucked out of her mouth and cannot even walk. This scares me shitless. Did cancer do this to her?? Must have, because that is what the floor we are on is dedicated to…. I’m dying to know what happened, but too scared to ask. My mind is freaking out and once again I hear myself saying over and over how lucky we are that Ronan is only dealing with this. Am I ok?? Yes. No. Absolutely not. I’m not o.k. and I may never be o.k. but I can put on a good show. A great show. I will smile for my husband extra bright, be the best mommy in the world to my twins and act like everything is A-o.k.  because that is the only fucking choice I have. I will vent on here because it is my escape, I will talk to my therapist and my friends, but I will stay strong in front of the people who need me most. Well, I will try my hardest… sometimes, I have no control over the things I am feeling.

Ronan is worrying me. He hasn’t been eating much and has lost some weight. I know it’s because his stomach is upset but the last thing I want is to have to have a feeding tube put in his nose. OMG. Could you imagine how pissed off he would be about that one?? I’ve got to get him eating. I don’t care what it takes… I’ll let him eat McDonalds 10 times a day if I have to. He has to start eating… I will do whatever it takes. I have got to get his counts to come back up and this fever to go away so we can get him home again. His little spirit is so crushed when we are here. He wants nothing more but to be back at home with his Daddy and brothers.

18 thoughts on “Back in the hospital. Boo.”

  1. Thank You so much for sharing Ronan’s story, I check everyday to see how you both are doing.
    I am very sad to hear he is back in the hospital and am praying that he will regain his strength and appetite quickly and be able to go home. My heart breaks for him and the other children that are suffering from Cancer it’s such an evil disease.
    I want to thank you SO much for sharing the good, the bad, and the pain that you are all going through in this fight against Cancer. I wish I had the ability to provide you that padded room for screaming and a punching bag to relieve some of stress that must get overwhelming. I will keep you all in my Prayers and keep spreading the word.

  2. Maya, this ordeal is an incredible one and we know exactly the journey. Believe it or not, it’s gotten even easier in many ways now than it was 13 years ago.
    I hate to be the bearer of not so great news but it does only get worse from here so the more you can see your therapist, the counselor at PCH, your docs and nurse, the better you may handle it all.
    We can see that this is all affecting you and your personal relationships so profoundly that it’s troubling. Do whatever you must do to get help for yourself. You can only be a support to others if you are sound mentally and physically and we’ve been reading and waiting to see glimpses of that since the beginning of your blog. Unfortunately, not seeming to happen.
    Take care of yourself.

    1. The Thompson Family may have a hard road ahead and I think they all know that. What they need to hear right now from friends and family is that they are loved and supported NOT that things are about to get worse. I can see that you care about Maya and that you are just concerned with her ability to cope with all of this but I don’t think that this is the place to voice those concerns. It sounds to me that Maya is handling all of this with enormous amounts of strength and poise; more than I could ever do. Does she have low, low moments where she breaks down? Yes, of course; we all have moments like that in our lives when we’re not dealing with our precious child fighting for his life. Does she want to beat her frustrations out on a punching bag? Why not?! Studies have shown that exercise and physical exertion are one of the top ways of eliminating stress. She is seeing a therapist, talking with close friends and family and getting their support, and using this blog to vent her feelings. I think she’s doing everything she can to stay strong when she needs to most. I know you are just probably just worried about her but I have to say that those comments you made took me aback when I read them. Maybe it’s true what you wrote, but I think something like that is best said person to person instead of calling her out in front of everyone who reads this blog.

  3. I’m glad you mentioned Mia. I’ve been praying for Mia and her family. I continue to pray for Ronan, you, Woody and the twins. I’m glad you are writing this journal. It helps to see each day how God is at work. Even though you don’t see Him working for you sometimes. He is FAITHFUL.

  4. I’m sorry I don’t agree with that comment
    I think that you are putting everything you have
    into handling this in the best way possible for you and your Family, I have seen a lot of positive on here and just because others have different ideas on how things should be handled doesn’t mean that you are doing wrong it means you are doing what is right for you and Ronan and the rest of your family. I don’t imagine you are thinking this is getting easier anytime soon and am pretty sure you probably don’t need someone to tell you that it gets harder since you are living it. I am not sure how anyone could go through what you and your Family are going through and NOT have it affect every part of your life. Stay strong and keep the faith and keep on keeping on

  5. MAYA!!!! I believe you are doing the BEST DAMN JOB you could possibly be doing!!! You are Supermom and Ronan is Superboy!!! Don’t let anyone else here on this blog tell you any different…. Yes keep up your therapy because it will get you through the harder times. Just remember what you said. Things get worse before they get better!!! However I think everything you do is fantastic. No its not a normal life and no your not ok. But I think your doing ok for a mom whos precious baby has cancer. Your way more ok then I would be.. I know its hard but continue being Ronan’s SuperMOM! I can tell how much he loves and looks up to you in everything you write. I have a 3 year old son and I can’t even imagine. I know I would have to stay strong for him and I would have made every decision that you have because you just can’t give up!!!! Thank you for posting your blogs. I think you should turn it in to a book and sell it for Ronan’s foundation. Your words are encouraging to all not just those who have family members with cancer. You make the world see the world in a different light! Thank you for being an amazing MOTHER!!! God bless you all!
    Lots of love and
    ALWAYS PRAYING!!!!

  6. I pray the Lord touches your heart today and speaks of His love for you and your family. I pray He touches Ronan and gives him strength. I pray the Lord takes care of ALL your needs. You are on His focus, you and your family and I am pleading with Him that He will stay very, very close to you through every minute of this and that He will prove it. That is what our Lord wants, to take care of all our needs.

  7. You and Ronan must really be on my mind. I dreamt about your beautiful little boy last night and I have never even met him! See what an impact you and he are having? I can’t imagine what you’re going through, and I appreciate your honest updates. I think the punching bag room is a great idea! Know that you are all in our thoughts and prayers.

  8. I am back with some Scripture..I read a devotional every morning and I had read your blog first. I seriously know God speaks to us through His written word. Here is some of it..( I read from the Complete Jewish Bible.)
    Ephesians 6:4…raise your children with the Lord’s guidance..
    Hosea 11 ..Who was guiding them..with reigns made of love..with them I was like someone removing the yoke from their jaws…and I bent down to feed them..
    Psalm 77..I cry aloud to God..He hears me.. You went through the turbulent waters..You led Your people..
    These are good words for you and all those that you share His faithfulness with. I am trusting that God is showing His love.
    I didn’t choose these particular Scriptures..they were in today’ devotional already but I think they are encouraging for you. I am praying for Mia and her family also..and yes a punching bag room is a wonderful idea!

  9. Maya, You are amazing, your are honest and you have so much strength…. The people that provide you with strength will move closer the people that provide you with negativity will move further away… I beleive it all balances out. It all comes out in the wash. Every situation is different therefore I have no idea how someone could unkindly tell you things will get worse. This is your families difficult journey and no one has a glassball that sees the future. Continue to let your heart lead you. You are an amazing Mom, Wife and your honesty is unbeleivable. The good the bad and the ugly, you are always honest.

  10. Praying for Ronan to start feeling better and for his ANC to come up so he will be protected from germs and added sickness. Also praying he will start eating good to keep his strength up. Keep believing! You are an AMAZING momma 🙂 you and Ronan are both a great inspiration. Sending love….

  11. Paul – keep your realist comments to yourself. Seriously. Maya and her family are going through the hardest battle of their lives and you’re telling them things only get worse? Do you really not think they know this? How can you even tell her she needs help or to expect worse things to come? How about you go back 13 years ago and remember what you were going through, and then ask yourself if someone made a comment to you regarding these same things that you’ve told Maya, how you would’ve felt. I mean I don’t know if you meant to come off sounding like a complete jerk, but you did, and embarrasing Maya or making her feel less of a person is really not okay. If your journey has left you calloused, bitter, and somewhat elitist in your thoughts and feelings on how a mother should handle her son’s battle with cancer, how about you do us all a favor, and don’t bring it to this blog.

  12. It sounds like Paul may have had some tough experiences too. Painful moments in our lives affect us all differently. Some people focus on being prepared for the worst and being relieved when/if that doesnt happen. It may be that Paul is trying to help Maya in his own way and though it may not help, and it may even hurt, let’s all take a breath and remember its very likely that everyone reading this blog has been touched by illness and death and loss. Let’s be here for one another and do the very best we can. Sometimes one of may not say the perfect thing in the perfect way, but thats when the rest of us can step in with love and support and positive thoughts to keep us focused on bringing into reality the day when Ronan is cancer free. Maya, I havent prayed much since I was a child and decided that since God didnt care enough about me to help me when I needed it, the hell with God. Its been a long journey back for me. Complicated and not over yet. Still, I pray every night for you and Ronan.

  13. Woody’s Mom Kay and I are good friends and have been for many years. Kay is my daughter, Allison’s Godmother. We live in Spokane now but lived in Phoenix for many years.

    The Thompson’s are one of the best and strongest families I have ever had the privledge of knowing. Ronan is lukcy to be a part of that family.

    I have fond memories of Woddy when he was Ronan’s age runnig around the house with his Superman Cape on. THe S for Superman was always backwards. He was a precious child who grew into a great man.

    You are all in my prayers,

    Susan

  14. Hello Maya,
    I saw your post on the Layla Grace Foundation page on FB just after Ronan was diagnosed and I have been following your blog ever since. I want you to know that you and your family have touched my heart. I can feel your every emotion and I feel as if I know all of you personally. My thoughts and prayers are with Ronan, in the hopes that he will kick this cancer’s butt for good!! Say it with me Ronan, CANCER SUCKS!

    Maya, it’s perfectly ok to be pissed off and lash out and have emotional breakdowns. Goodness, you have so much on your plate. No one blames you for being human. You know what? We need to get you a “Damn It Doll”!! Just to have around, so you can beat the crap out of when you feel you need to release some stress or anger. ((I used to have one, and trust me, it works!!))

    Keep your head up and stay strong. Hug your babies and kiss them good night. Take care.

    Much love from Texas,
    Stephanie Rdrgz

    “Let love rule thy heart, logic rule thy mind and faith rule your soul.” — unknown

  15. Wow interesting turn of events here on this blog. Maya you see the light and that is why your pissed. You want it now and but it may be some time. Your stubborn ass knows to always be true to yourself and your family..whatever that entails..no judgments here ..just love from everyone.. we will cahoot another night xo

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