Tuesday, November 9, 2010


Today in the elevator was a fragile little boy sitting in his wheelchair. He had a N95 mask on that was too big for his face. He was hunched over and bald and his head was lowered. He was being pumped full of antibiotics and fluids and he just looked so sick . His little body could have brought anyone to tears. As a took a step back, it almost brought me to tears, and then I realized this little boy was my son. Even 9 months later I wonder how we got here. It is hard for me when is completely strong and sarcastic and the next moment he is so beaten down by chemo. Currently, things are a blur. I haven't slept, my back hurts from the joke of a bed I sleep in and I want to cuddle my other babies too. It is always so hard to kiss them goodby when I know I will most likely be gone all week from them. I miss my husband. Between out of town business trips and back and forth stays in the hospital we haven't seen eachother for a month or so, just in passing. How is that good for anyone? Gavin was 9 months old when Spence was diagnosed and it has been 9 months since diagnosis. Half of his life he has been dragged back and forth and he has spent days apart from me. This has been such a drag through the mud, run over by a hundred Mack Trucks kind of year.
I am going to move on from my sadness and get frustrated and mad for a minute. Bear with me. Spencers fever is not going down or away. It is not fair. It just really sucks, for a better lack of words, to have one thing after another go wrong. He is not in as much physical pain as he was last time but he has horrible mucositis (mouth sores that can go from the mouth all the way down to the bum). Usually they stay in his mouth but this time they are going all the way down, impeding his eating. He had a standard ct scan today. After 5 days of a high fever they need to make sure that the brain is functioning properly. Well the ct scan showed abnormal impaction in his sinuses. Because he has no white blood count they are very concerned about a fungal infection and decided that he would have to go in for an immediate if not emergent nasal biopsy. We had this happen last time on a not so immediate but precautionary measure and found nothing but this time it will be a little more invasive. This is going to give us a handful of more days in this place. I am sooo thankful to have the healthcare we need to keep him healthy but I want to be home. I want all of us to be home. {Deep breath, we only have 3 months left of inpatient hospital stays}. it is hard to keep positive when you are so tired and so sad from watching your baby cry because of all the crappy procedures and poking and prodding. This is not a glamorous life.
An hour or so later....
Deep breath out. Our beloved ENT Dr. Grimmer, came in to do a quick and shallow scope of his sinus. He assured us that it is not a fungal infection and a nasal biopsy is not needed. He diagnosed him with a regular, normal sinus infection, which all of us in the family have been suffering from, and said it will just take a little longer than normal to recover since he has a zero ANC. So I am wrong to say that things keep going wrong because this is all right for the moment. I will not jinx us. Also, Dr. Fluchel, the attending here this week, and our oncologist had a good talk with us too. He thinks he is doing well considering and is guessing that we will most likely have to reschedule his next chemo but reassured us we wouldn't have to be here for Thanksgiving. Phew. Today I have a headache and am ready for a good sleep in a good bed.


  1. You are such an amazing women, mother and wife! I am in tears reading your post and I admire the faith and strength you have! You have every right to be mad and upset and then turn around the next moment and be grateful that all is right, and that you have an amazing eternal family.

    I have no idea what it's like to be in your shoes, but know that I'm one of so many people who are thinking of you guys, and praying for you guys each day!! I wish I lived closer to you to come and help you doing what ever you needed me to do.

    Spence is such a hero to me! He's a fighter and he has amazing parents who's faith and dedication to him are helping him through this. I'm happy to hear that right now, all is well.

    Lots of love from TX!!

  2. I love you Holly! As I was reading this I kept thinking, here is holly who is in the hospital with her little boy and has so much on her mind, yet she is ready and willing to answer my questions and try and help me with my Modge Podge Disaster!!! You are the best Holly! Tell Spencer we love him too!

  3. you are truly amazing...i think of you and your cute family all the time! your in our thoughts and prayers! love you!

  4. Goodness Holly - I wish there was something I could do for you. You are simply amazing! I don't know that I would be doing as well as you are in the same situation. You are so good at finding the silver lining - being grateful in the face of so much pain. I have truly come to love you and your little family. I know Trent has so much respect for Nate - he sounds like an amazing guy. You are so often in my thoughts and always in my prayers. You are a constant reminder to me that I need to be a better mom - like you. Thank you again for sharing this with us...we will pray that you will find Spencer's little bear - much love is being sent your way!!

  5. I am sending every bit of positive energy, prayers, and love that the universe can send you from me. Your family is amazing. You can't imagine how many people love you guys.

  6. You are doing great! It is okay to get angry and sad! You wouldn't be normal if you didn't. Kristoffer had his 6th surgery today and it was to remove the port that gave him the horrible chemo. Spencer will be there soon. This is a brief moment. Even though I know it doesn't feel like it! Hang in there! Your so strong!

  7. I agree with the previous poster, it is okay to have all these feelings. Give yourself a chance to vent, cry, even scream. It will give you strength to go on.

    I have read several of your posts about Dr. Grimmer. About 5 years ago while living in New England my then 11 mo. daughter was taken to Boston Children's hospital after aspirating a foreign object that had embedded itself in her lung. A Dr. Grimmer did the surgery on her. Not exactly a common name. Tonight I did a quick Google search on YOUR Dr. Grimmer. Turns out, he's one and the same! Small world. I really liked him and it sounds like you do too.

    As always, my prayers are with you and Super Spence :)