I Won’t Let Go

It’s been a shitty week.

About a year and a half a go we met a little boy, Eli who was the same age as Bo and has a complex medical history like Bo. He has mitochondrial disease and spent as much time as we did (do) in the hospital. I got to know his mommy, Heather, and we could chat about Medical Stuff. It’s nice to have someone I can talk to about everything, without explaining all the details as I go, and who understands what it’s like to parent a child with a serious illness. Eli and Bo have all the same doctors. Almost every single one of them refer to Eli and Bo as “the two boys who keep their brains busy” as they navigate the next steps in their medical care.

Eli passed away on Sunday at KU Med. He was three years old.

76-Tomkins Nov 12

Elias Richard “Eli” Tomkins December 1, 2009- April 28, 2013

I can’t tell you how much Eli’s death has messed with my heart and mind. How and why did this happen? It’s not supposed to be like this!

I think part of me is so freaked out because we’re in an eerily similar situation as Eli: we don’t know why Bo has what he has or exactly how to treat it. Obviously, we treat individual issues as they come but there’s no actual treatment for IPEX. There’s no actual cure.

I can’t imagine losing a child- not Bo, not Brooklynn, not Johnny, not Leksi. My brain can’t process those scenarios. I’m trying not to let scary thoughts get the best of me but it’s hard not to wonder what’s next for us? Where do we go from here? How much longer can Bo’s little body handle all it has to endure?

Eli was a  WARRIOR. He was a fighter and he battled things no child should ever have to fight. It makes me so angry. No parent should have to plan their child’s funeral! I was meant to be Bo Mommy and I will always be grateful that I get to be Bo’s mommy…but it’s damn scary.

There’s a song by Rascal Flatts I Won’t Let Go that I always go back to. Read these words. This is how I feel about being a parent to a sick kid!

“I Won’t Let Go”

It’s like a storm
That cuts a path
It breaks your will
It feels like thatYou think you’re lost
But you’re not lost on your own
you’re not aloneI will stand by you
I will help you through
When you’ve done all you can do
If you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I won’t let go

It hurts my heart
To see you cry
I know it’s dark
This part of life
Oh it finds us all
And we’re too small
To stop the rain
Oh but when it rains

I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight

And I won’t let you fall
Don’t be afraid to fall
I’m right here to catch you
I won’t let you down
It won’t get you down
you’re gonna make it
Yeah I know you can make it

Cause I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
And I will dry your eyes
I will fight your fight
I will hold you tight
And I won’t let go
Oh I’m gonna hold you
And I won’t let go
Won’t let you go
No I won’t

It’s sad.

It sucks.

I hate it.

I am sad and mad and angry.

I don’t want Eli’s family to suffer this loss. It is so very frustrating and heartbreaking!!!

I couldn’t sleep last night and I wasn’t sure how to even blog about this. But I want everyone to know that Eli was such a trooper and so was his family. Having a child with a serious illness effects everyone. Just like our family, I feel terrible when Bo is sick- not just for Bo but for my other kids too! It scares them when we have to go to the hospital but our kids are expected to act like everything is normal. It can’t be easy for them. It’s not easy for them. Thank God we have a great family, friends and community. It so important to have these people in our life. The unconditional support helps more than people realize!

Please pray for Eli and his family. They will say goodbye their final goodbye at Eli’s funeral tomorrow.

Hug your loved ones today. you just never know!


Good grief!

For the past 7 weeks Bo has, for the most part stayed, healthy! Two weeks ago that all changed. He and Brooklynn both had a cough which I thought was surely from the crap-ass weather. Cold hot, cold then hot, just pick a season- seriously! We saw the doctor two times in a week, I accessed him [his port] at home and started him on some antibiotics for a sinus infection and an ear infection. All is well? Nope, five days later *BOOM* it hit him hard. He had 104 temperature, 90% o2 stats, and a heart rate of 200, and landed us in the hospital!

We ran a ton of tests and he ended up having pneumonia. It took three antibiotics to help. He also had something new! His hemoglobin, platelets, white count and a few more were all low. Really low! His hemoglobin was 7, platelets 99 and white count was 2. Yep, when he goes, he goes big! He had an iron infusion and spiked a fever, not sure if this was bad timing for the fever or due to the infusion. He will continue to get these weekly until we figure out why his body is working in the opposite direction?!? Is this the IPEX? We don’t know! We have a lot of appointments coming up to figure this out. If all the tests come back okay, they will have to check his bone marrow to see if (or why) he isn’t producing white cells. That won’t be fun! At the end of this high dose of antibiotics he will have a bronchoscopy to see what’s going on in his lungs. Hopefully we will have some answers soon!

We have started a Super Bo Facebook Page. It’s easier to update on it when Bo is in the hospital. Find us and like it!

I have to say a few other things too. We are so blessed and lucky to have the people we have in our lives! I have no idea where we would be with out my parents, my in-laws,my sisters and my two sisters- in-law! They keep my family together. We work as a team! While we were in the hospital last week, John was out-of-town working. My three other children were taken care of by parents and in-laws!! They will never know how much I- we- appreciate them! Thank you!

To my amazing friends, thank you for the visits, the talks, my lunch shakes, everything!! I am so lucky to have amazing friends! Our community is unbelievable. Our teachers at our school keep my 2 older children safe and sound and make sure they are doing okay! They ask my kids and my niece how Bo is doing. It’s amazing all the way around! It makes my life so much easier. You guys will never know how very grateful we are!




Where do I start? This winter has been so hard on us, I mean really hard! Last Friday, January 11, Bo woke-up a little cough- nothing major- just a cough. As the day went on he was gradually going downhill, acting tired, acting different. By 2:00 he was hardly moving. I checked his temp and it was 100 which was unusual for him. He rarely has a fever but 100 was not terrible. By 3:15 he couldn’t walk or even get up. His temp was 103.9 and his 02 level was 70% (which is terrible) and he was also breathing around 80 reps a minute and I was kind of starting to freak out. Luckily, my father in law as at my house. I called the doctor and we were headed to KU Med. By the time we got to the hospital, around 8 minutes away he was in bad shape. When we walked in the door his 02 was 61% and the temperature under his arm was 104. They took us straight back and accessed his port and started pumping him with fluids…and from that point on it slowly got worse! They started him on albuterol every 6 hours at first and each day he got worse. By day 3 he was so bad he was on a continuous albuterol treatment which meant he had to keep a mask on for 15 hours. It was terrible. He was so sick.

By the 3rd day we knew he had pneumonia and RSV. They started him on 3 different antibiotics and told us if things didn’t get better soon they would vent him (!!!). I, of course was not at all ready for that, venting Bo is very risky because he already has a very compromised airway from being on the vent in the NICU and from all of his other stuff. (Hopefully with in the next month he is getting a bronchoscopy to see what is going on with his airway.) We were moved to the PICU where they gave him some magnesium to try to force his lungs to open up!

The PICU is where my brain went from “poor me” to “Wow I am so blessed and lucky it’s not worse.” I was able to lay next to my very sick baby boy, but he could still look at me and give me his little smile every once in a while. I could see how dark brown his little eyes were, I could hold him and comfort him the best I knew how. It was the most surreal thing I have been part of in a long, long time. I thanked my lucky stars every second because I knew it could always be worse. We spent 3 days in the PICU were Bo was finally starting to act a little like himself.

After 8 days in the hospital he was ready to come home. The amazing Cathy taught me how to access his port at home. It was scary but I did better than I thought I would.

I clearly didn’t give all the yucky details of our week, it was very long and very scary but right now he is okay and home! I have no idea what is next for us, we have a meeting with our team of doctors to see what we do next. Since Bo produces no T cells, IVIG isn’t going to do anything so why do an extra procedure? Not only that we aren’t sure if he will even be able to handle it without going into shock because he can’t handle the blood… We are hoping to have some sort of plan soon. Bo is going to have his tonsils and adenoid out but I am not sure when. Right now he has to get over pneumonia and get better. The doctor will not put him under general anesthesia until he gets the all clear. I will keep you posted!

Here is what I do need to say: THANK YOU. The support we have received is amazing. The people who support us are unbelievable, truly. Thank you everyone who has brought dinner and are bringing dinner. It helps in so many ways! Bo received an amazingly BIG box from some wonderful people far away at Paramount Pictures and, let me tell you, he was in love with it! Melman the Giraffe has yet to leave his arms. We couldn’t do the things we do without the help of all of you. My parents and John’s parents- thank God they all live here and close. We wouldn’t know what to do with ut them. Les, Lisa, Christy, Shawna, and Tina: I have no idea what we would do without your help and constant support, thank you!!! So many, many more I couldn’t possibly name them all so thank you!!!  Thank you! Thank you!! Thank you!!!