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.

 

 
Posted By The Ginger Twins

Today is our rest day.  Brock has had 4 doses of ATG, 4 doses of Busulfan, and 4 doses of Fludarabine in 7 days.

That is a lot, especially for a tiny peanut like Brock.

The good news: Brock has responded in the appropriate manner to all of these drugs which is a great sign!

The bad news: Brock has responded in the appropriate manner to all of these drugs which is a great sign!

No, I did not write it wrong.  The effects get nerve racking, even though we are considered veterans at this, it doesn’t make it any easier.  Right now everything is pretty manageable.  But, when Brock is inconsolable and screaming and you just cannot figure out what to do, that hurts my heart.  Is he nauseous or is he in pain?  Am I really sure its pain before I OK another dose of morphine.  Maybe he is tired or hungry or gassy, he is still a baby with baby problems I say to myself.  But now as a 4 month old he has baby problems AND adult problems that he cannot express himself, it is up to us to figure out what he needs and when.

His blood pressure has been the biggest issue.  His parameters are 110/70.  He is getting .5mg of Amlodipine twice a day (aka BID), he does have room to go up on this though.  Amlodipine is a long term blood pressure drug so while we wait for that to work the next few days he gets his “emergency” BP meds whenever he is over his parameter.  He has been getting these often.  It’s all a balancing act to find the right dosage, but that is why we have a great pharmacy team to help get it right.

Bryce has received 2 blood transfusions so far (please consider giving blood for this type of reason……without it 3 of my kids might not be here).  He has done quite well for these and this is typical for transplant patients to receive many of these.  Once his hemoglobin goes below 8 it is automatic.  Now that I type that I think I said that in my last blog.  OOPS.

 

 
Posted By The Ginger Twins

How are WE doing?  It’s day to day for us, which I will gladly take over minute to minute or hour to hour.

We went to the Mumford and Sons concert the other night with the older 4 boys.  This was at the Xcel Energy center in St. Paul.  We had to eat first since it is so expensive to eat at any concert.  Not knowing the area we drove “straight” and found the first food option available, Burger King….YUK.  Well I find out after the fact this is NOT a place for us to be.  It was dirty with some very sketchy people.  But, having 4 drug dealers right outside the window we are eating at with 4 young boys just made my blood pressure go pretty high.  But, Beau’s comment “Wow it’s amazing what that guy will do for cigarettes” made me hurry up and get everyone out of there.  We left out of a different door away from these guys but couldn’t avoid walking past them.  They muttered something to Brian and we carefully tried not to make eye contact and get in the car.  Once we walked the 15 feet I looked over at the drive-through that was next to the group of “cigarette lovers” and here are two more huge guys doing god only knows.  At this point I am yelling at Brady to hurry the hell up and get in so I could shut the back.  (Yes, we use the trunk for Beau and Brady to get in and out so that way they don’t have to climb over Baen, Brock, and Bryce.)  Driving away with the doors locked and everyone safe took a huge weight off my shoulders!  No more eating in that area again!

The concert itself was good, though I would still rate Imagine Dragons at the top of my best concert list.  (Ironically, Mumford and Sons just came on my Pandora radio as I type about the concert.)  I didn’t think to bring ear plugs to the concert for the kids and it was super loud.  We used donated tickets from RMH for a suite, which thankfully had a closet.  This is where the boys stayed with their electronics while Brian and I enjoyed the concert since plugging their ears just wasn’t cutting it!  Yes I had my kids in a closet, no it wasn’t locked! 

 

Tomorrow is a big day for us.  Transplant Day.  Bryce is already asking the details on what it means.

It’s late so I will try and blog tomorrow night to explain to those who haven’t been through this before what really happens on transplant day. 

If you are the praying type please send out an extra one for Brock.  Pray that he receives it well.  Pray that the side effects of the chemo are tolerable (Day +3 to +15 are usually the worst for all transplant kids).  Pray that his new donor cells grow!!!!!

 
Posted By The Ginger Twins

Not a whole lot has changed with Brock the last two days.  He had fevers and threw up once but not such a big deal to “veteran transplant parents”. 

We are on Day -6, still just ATG. 

To fix a few things I screwed up on the last blog…..the animal that helps make the antibodies is a horse and rabbit.  Not a pig.  The other thing that I screwed up is that ATG is not a chemo.  Don’t let those words fool you though, it’s still doing a number on his system.  It is an immunosuppressant, which as the word describes, it suppresses his immune system.

It’s a rather quiet day here at the hospital.  I won’t be saying this for long.  I am enjoying the quietness.  I have begun my “natzi cleaning.”  For those reading this who have gone through transplant I am sure you are familiar with the constant cleaning and sanitizing.  I am “that mom” that cleans EVERYTHING.  The “purple” wipes, which is just the hospital grade wipes with the purple top that are super strong, are my friend.  I clean EVERYTHING, and often.  The chairs, floors, crib, wires, pumps, computer, handles……you name it, I clean it.  Sometimes multiple times a day.  With the twins I had the Drs laughing since there were times that they entered the room and I am on my hands and knees scrubbing the floors since the cleaning people didn’t scrub as well as I can.  With that said, I miss our cleaning lady “jumpy jumpy” from 4 years ago with the twins.  Her name is Malia, I am sure I spelled it wrong but it is Middle Eastern and I have no idea to spell those names.  She barely spoke English but she was always so nice and did such a great job.  We called her “jumpy jumpy” because the twins were always in their bouncer and she came in the room jumping just like they did saying “jumpy jumpy.”  I am less than impressed with the new one since all she did was empty the garbage and leave.  BMT rooms need to be scrubbed as often as possible to keep germs away.  A simple cold can put Brock in the PICU and be life threatening.  It would be great to get through transplant without heading downstairs to the PICU.

Meanwhile back at RMH the boys are keeping busy.  The twins were ECSTATIC to get their nails polished the other night.  Brian, Beau, and Brady had a tough time keeping their mouths shut but they did a good job keeping opinions to themselves.  Beau and Brady are loving RMH School.  I believe the two of them make 8 in the whole class.

Had to take a break to feed Brock, 20 minutes later it all came back out!  Hope you aren’t eating while you read this J

Tomorrow starts Busulfan and Fludarabine.  So he will have his last dose of ATG, and both chemos in one day.  Anticipating a crappy day!

Off to RMH for our dinner with the boys.  Our plan is to have dinner with the four older boys to give them some time with both Brian and I.

 

 

 
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