Posted By The Ginger Twins

Today is day +27

I have literally started 6 blogs and then go to bed.  For me to keep up with what is going on is exhausting.  Then to write about it makes me want to drink, more!

Mimi went home yesterday for a break before the twins have hip surgeries.  She went out with a bang, right Mom?????  There are pros and cons to this.  I have a bed back….ha ha ha.  She knows this doesn’t mean much to me, I am preferring the coach since it hurts to sleep in bed.  She can get a break from this crazy bubble we are living in.  It is rough no matter what your role is.  I am sure this is not what she planned for her near-retirement period in her life to be, but we couldn’t do this without her.  I am not an emotional person, we all know that.  I have a hard time showing appreciation besides the constant thank yous.  But, thank you Mimi.  I know it’s hard living with me and my sarcasm.  Isn’t that why Brian plays on his phone so much????  Ha ha ha

A pro to Mimi’s “vacation”, we are down an adult so chores are split between 2 people (or one like today) so I get more done.  I was a cleaning fool last night.  This was mostly part to the fact that I was so stressed with what Brock was going through last night that I didn’t know what to do but clean and organize.  This is not my typical stress activity, but now at least I am being productive!

Before Mimi left we took all the boys to Nickelodeon Universe, Brady’s favorite spot in the whole world.  He was stressing because he was afraid we wouldn’t get there.  We had a family about a month ago hand over 3 free all you can ride wrist bands.  WOW did that save us a lot of money.  We rode rides for about 4 hours.  We went during the school day so there weren’t really any lines.  We went to the Rainforest Café, a favorite of ours, and had a great time together.  I always feel like there is a piece missing when we do these things since Brock isn’t with us.  He obviously can’t ride the rides but I don’t want to leave him out either.

 

 

 
Posted By The Ginger Twins

It has been 36 straight days of being inpatient, 14 DAYS IN THE PICU.  I thought we would have been pros at this and be able to put emotions aside and get through this.  I was wrong.  Brock is smaller and had airway issues before transplant.  To watch him fight so hard is just down right painful.  I am keeping myself busy with watching Netflix series while I am at the hospital since every time I touch him he hurts and has a hard time breathing.  At this point I don’t have the energy to update with details.  His lactic acid is a concern today.  It was trending down while I was there today and now it’s trending up again.  We went to a new BP drip and that was helping, but I guess not anymore.  He is on his bi-pap mask but it is leaking so much since it doesn’t fit I am not sure if they will be able to continue.  The scuba mask is his last step before being intubated again.  This roller-coaster has many highs and lows and long as hell.  I’m ready for it to slow down.  We want to go back to 4th floor, our home.  He is fighting so hard.  I’m so proud of him.

Trying to keep life as normal as possible for Beau, Brady, Bryce, and Baen is tough, I am not going to lie.  Brian and I both just want to sit at the hospital and be with Brock, but that will make for very depressed children.  They know that Brock is sick and in the PICU.  They have seen him with the breathing tube, his blue mask, and the scuba mask.  Beau and Brady know the severity of the situation.  Brady came out while wiring this to get his eye drops since he know is reacting to environmental allergies.  He asked what the worst floor of the children’s hospital was.  I told him the truth, the worst you can do is lie about family issues like this.  You can see the wheels turning in that brilliant mind of his, he knows that doesn’t mean the best news possible.  But, I told him there are other kids much sicker than him on that floor, so that helped so he could go back to sleep.  Inside I want to tell him that we are doing everything we can to keep him fighting so he can make it through this.  To keep that positive face and tell the other brothers that things are going ”ok” is probably the hardest thing a parent has to face.  I pray over Brock daily to keep fighting, his life has only begun.  To put a happy face on and attend activities with all the boys is very hard.  People ask, including the staff at RMH, and I just say…..he is doing “OK”.  But here, at the RMH, they can read your face.  The staff has seen hundreds of families do through their lowest lows.  A lot of the other families “get” what you are going through.  They too have fought, or they are fighting.  It makes you feel like you aren’t alone.  Although you feel lost.

I pray each day that I have a family that loves each other, brothers that adore each other, and a husband that is such a father to our boys.  Brian and I are not perfect by any means.  We do what we think is best.  We believe this is best for all of us, no matter how hard.  We are a team and we are fighting for Baby Brock.  You got this Brock!  Fight HARD BROCK!!!  We want to see that amazing smile that you have very very soon.

 
Posted By The Ginger Twins

This is what I started writing on day +12, 4 days ago........

 

We are in the thick of the scary part.

Although Brock is still on the BMT floor the thought of Baen and Bryce already being in the PICU will not escape my thoughts.  Brian and I have seen much more through all of our BMT processes than many other families, not only because we have three children with Hurlers, but because the twins didn’t have the best ride through, especially Bryce.  I told our attending today that I try very hard not to compare since he is a different child and this is a whole different protocol, but unfortunately my mind can’t just shut that out.

We are currently day +12.  WBC is .2 which is a good sign.  No ANC yet, but that usually doesn’t come until the WBC is around .5, so we have at least 3-4 days before we should see that.  I am not always the best at describing what all this means, Brian has one of those brains that can hear or read something once and be able to remember it verbatim.  So maybe he should be writing some of these blogs?  Hmmmm….Brian?

Here is what medicinenet.com tells you what ANC is “After chemotherapy, radiation, or a blood or marrow transplant, the ANC is usually depressed and then slowly rises, reflecting the fact that the bone marrow is recovering and new blood cells are beginning to grow and mature.” 

I think that is a good plain explanation……so now we watch those numbers.  Engraftment blood draws are day +21, then results are usually by day +28.

In the meantime Brock is miserable.  All that chemo has caught up with him.  He is such a peanut that dosing meds and waiting and watching is a little trickier than with the twins. 

 
Posted By The Ginger Twins

With some disease that require transplants, chemo, or radiation there is a big chance that once treatment is over the disease is in remission.  I am not naming diseases because I don’t want it to seem like it’s an easier disease to have, it is NOT.  I am also not saying that once in remission there aren’t doctors’ appointments and tests to make sure they stay on top of it, it is still a lot of work and a lot of stress and uncertainty.  The point of me saying this is because with MPS1H aka Hurlers aka mucopolysaccharidosis type 1, there is NO CURE.  This is the disease I know most.  I am by no means an expert on other diseases, I am saying all of this from my own experience.  So please do NOT think that I am down playing cancer or any other awful disease that fits into these parameters.

May 15th is the day for all of us MPS parents to try to get even more awareness out there for our babies.  There is a poster that is floating around on Facebook that is very strong.  It posts next to a picture of the effected child (or in my case children) with the words:

I was born with the potential to do anything.

MPS is slowly taking that away from me every single day.

In spite of it all, I live.  I love.  My life matters.

Please remember.

May 15th.

 
Posted By The Ginger Twins

Many days between posts.  Although we only have 1 child with a transplant this time, it’s a different kind of busy.  With all 4 older boys there is always something going on.  Brian, Mom and I take shift every day.  Brian has the overnight since he sleeps through everything.  I take over 10-11:30am depending on what is going on that day, and then Mom takes over for the evenings. 

While we take shifts taking care of Brock we have all of Baen and Bryce’s appointments to go to as well for their yearly check-up.  The “ologies” as we call them are, cardiology, ENT, audiology, neurology, BMT, ophthalmology, ortho for spine, ortho for hands, ortho for hips, endocrinology, pulmonology, lab after lab after lab, 5 sets+ of xrays each, a bone density test for both, an OR day for MRI’s, LPs, EYE exams and pictures.  We usually do all of that in 2 weeks but this year we are stretching it out since we will be here for so long.

They are also going to OT to try and strengthen their hands again and minimize the scar tissue as best as we can.  They will have to get another hand surgery in the next year because the trigger finger that was done only took care of the joint that connects the finger to the hand, not each joint all the way up each finger.  Their fingers have been triggering since they were able to move them right after surgery.  SO FRUSTRATING!!!  The twins are having their double hip reconstructive hip surgeries 6/14 and 6/21.  Then casted for 4 weeks each from chest to thigh.  All of this while Brock is continuing to heal and regain strength.  Why am I telling you all the details?  Not because of pity or sympathy.  It is because most people don’t even know about this horrible disease.  Or the other 7 diseases that are in the MPS “family”

May 15th is MPS awareness day.  If we weren’t so engulfed with the day to day struggles of Hurlers right now we would be trying to get more awareness out of needing a cure.  I met this really nice man while waiting for Endocrinology today that just couldn’t not believe that 3 of our kids will have to struggle with this the rest of their lives.  We often, very often actually, hear “They had a transplant so they are cured right?”  The answer is most defiantly no.    They will struggle with this disease their whole lives.  They will have procedure after procedure and we do not have a life expectancy for them.  This sounds very harsh and insensitive but after 4 years of dealing with this, it is the reality. All three boys have a terminal illness.

 

 

 

 
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