Monday, November 21, 2011

A LOT of catching up to do...

I really don't even know where to begin or where I really "left off."  But I'll start off by being honest and saying that I've been a little secretive lately- but it's for good reasons.  Trust me.

Let me start with the GCSF.  I think I left you all a few posts back (I think in October) where I was giving him the Rocephin injections to try and get rid of his current infection so we could get his white blood cell count in a semi-normal range so that he could try the GCSF.  I had told Dr. D that the only way I was going to try these injections was if everything was lined up with the GCSF so that if the blood work was good, that there would be absolutely no "window" of time for his count to go back up before we got to start this new drug. Well, about 4-5 Rocephin shots in (just FYI, those shots were horrible- something I will never do again), we drew his blood and his white count was in normal range (high-normal, but normal).  
So, with the help of Tripp's amazingly wonderful pediatrician and our amazingly wonderful pharmacist, "Uncle Trea," I had the GCSF in my refrigerator that same day.  

So I started the GCSF (Granulocyte - Colony Stimulating Factor), giving it subcutaneously (under the skin, into the "fat").  This drug is used mostly in chemotherapy patients to help stimulate the production of certain white blood cells.  I won't go into detail about what this drug is doing for EB.  Because honestly, I don't know enough about it- it didn't work in Tripp.   But that doesn't mean it hasn't had good results in other kids or adults with EB.  But Tripp has a lot going on... he's on constant steroids that we can't get him off of (we tried and were unsuccessful) and even though his counts were normal at that time, doesn't mean his infection was completely gone.  And those were the two things that we were told could affect the results of this drug... but I had to try it anyway, to at least say that I tried. 

So GCSF is a no for Tripp. 

The next secret is kind of a big one.  But in my defense, I didn't want to get anybody's hope's up.  

After realizing that we had exhausted pretty much every option of making Tripp comfortable, I revisited the idea of the Bone Marrow Transplant.  There has been a lot of people emailing me and posting asking me if I knew about the BMT.  I've known about the transplants since they first started them about 2 years ago.  I have followed many of the kid's journeys through these transplants.  And when they first started, this just was not an option for Tripp- he was not yet sick enough and they were extremely dangerous and brutal in children under a year old.  If you aren't familiar with the Bone Marrow transplants that they are doing in EB kids, I'll try and tell you briefly what they are about.  The transplant is NOT a cure (at least not yet)... It is a chance for a better quality of life.  It is brutal... the side effects of the chemotherapy are just horrendous.  Reading about what those children went through (some of these precious kids not making it through the transplant) was heart breaking.  I felt that bringing Tripp in for the transplant at that point was giving up and taking his life.  

Well, at the point that we are at now, I felt like NOT trying the transplant would be like "giving up" and just watching him die in my arms in the rocking chair.  And talking to the Ringgold's (who's daughter Bella went through the BMT last year and lost her precious life), I found out that the chemotherapy regimen was less "toxic" in the current BMTs that are going on.  So, I called Dr. Tolar, one of the transplant doctors in Minneapolis, MN who is currently responsible for about 18 Bone Marrow transplants in EB kids up to date.  We spoke briefly about what I needed to do to get an appointment with him ASAP.  The appointment would just be us deciding if he would even be a candidate for the transplant.  Dr. Tolar was absolutely amazing.  Usually, Tripp would have to travel to the "initial" appointment, but being as sick as he is, there was no way I could have brought him to Minnesota twice.  So he said that it was fine if I came without him. 

Like leave him?


So, I worked HARD contacting all of Tripp's doctors and getting all of his charts faxed to Minnesota.  I had to write a one page summary of Tripp's life (haha)... that turned into four pages.  I had gather pictures of his wounds from birth until now and we had to draw blood for his HLA testing (marrow donor).  All of that was sent to Dr. Tolar in Minnesota.  Now we had to see when the earliest time was that I could get an appointment, being as he is out of town a lot.  He fit us in within the week.  November 18th at 11:30am.  

another (GASP)

So I booked the tickets right away.  My boyfriend, Stephen, took the trip with me.  I know, I know... now the secrets are really flowing, right? :) He has been by my and Tripp's side every day for quite some time now.  Heaven-sent??  I think so.  So, he and I left Thursday evening after bath and got back late on Friday night.  My sister flew in town again to help my mom.  Mrs. Pam (MeMe) was out of town for the week or she would have been here like she normally is every week.   

The only tickets I could find with a week's notice worked out pretty well.  There was no way we could pull it off in one day because our meeting with Dr. Tolar was planned on being about 4 hours.  So we had to stay one night.  We left on bath day, so me and mom got my little man bathed early.  My sister flew in right before we took off so it worked out well.  And mom and Britt didn't even have to change his neck/trach bandages because I was back the next night to do it (that is done every day).  I still can't believe I left my bubba overnight.  But he was in the best hands possible- no doubt about that!!  Mom and Britt didn't sleep much- they just rotated and took turns watching him sleep because they were scared they wouldn't hear him and wake up to suction him when he woke.  It was a blessing the way things happened, though, because he was sort of "knocked out" after bath and for the rest of the evening I was gone, so he didn't really reach for me much (he's been a Mommy's boy lately, and I'm NOT complaining... I'm loving it).  So to leave for an entire night was really hard.  But I knew I had no choice.   

ANYWAY... on to the news...

Not necessarily good news, but it depends how you look at it.  

We met Dr. Tolar on Friday.  He was incredible.  He made me feel so comfortable.  He shares my passion for EB, for a cure, for these poor children.  He is a good man.  And I'm so glad I took this trip to meet him in person.  It helps you to trust someone by actually looking in their eyes.  
He walked in and I could immediately tell that this was not going to go as I had planned.  
But that was okay, too. 

The first thing Dr. Tolar said was along the lines of, "I looked through all of Tripp's pictures and charts and he's a very sweet and very brave little boy, BUT he is very very sick."  
I knew right then and there that my idea of what I thought was going to happen was not reality. 
I was let down and relieved at the same time.  I knew this was a "last resort" on saving Tripp's life.  But I also was absolutely sick to my stomach about putting him through such an awful procedure when he's already been through SO much. 
Now don't get me wrong, Dr. Tolar and I talked a long time about everything.  He made it very clear that if I wanted to bring Tripp to MN, that he would make it happen and that we could try to get him to a point where the transplant might be "semi-safe."  But he also said that he is 100% sure that Tripp would have every single complication from the transplant.  And he looked me in the eyes and said that he thought that Tripp was too sick to survive it.  He was not trying to "sell me" the BMT, he wasn't telling me that for my benefit, he was sincerely concerned about my son.  I felt that for sure.  And I respect him for that.

I think the biggest thing that stood out in our conversation with Dr. Tolar was when he told me that he "sat in" on an EB support group.  It was a group of older children who had Dystrophic EB.  He said that when the kids were asked if they would rather have never been born than have to live with EB, EVERY. SINGLE. ONE. of them said that they would rather die than live with EB.  
That is incredibly heart-breaking.
He said that I am "Tripp's voice."  Tripp can't tell me what he wants, so it's my decision to do what I think he would want and what I think is best for him.  

He told me that even though Tripp's biopsies were inconclusive to Herlitz or non-Herlitz (the two subtypes of Junctional EB), that he was 110% certain that Tripp was Herlitz- no doubt.  And it was then that he looked at me so sincerely and said that it was absolutely unbelievable that Tripp was still alive.  He complemented me for my care and devotion to my son.  It wasn't until then that I started to cry.  I know part of the reason Tripp is still alive is his care, but to hear it from Dr. Tolar... was pretty humbling.
He said it was admirable that I would make the decision to keep him at home for the "end of his life" instead of opting to take him to the hospital.  
Admirable = the hardest thing I will EVER go through.

So now... what's next? 
Your guess is better than mine.  Dr. Tolar said that he would help me with whatever I needed and would support me in whatever decisions I made.  He also said he respects my decision not to go forward with the transplant.  He, along with our amazing team here, is going to help me with pain control and trying to keep Tripp as comfortable as possible.  

Back to square one.  

When we came back from Minnesota on Friday, Tripp was feeling horrible.  The next day, he was running 102.6 fever, shaking in pain, and just crying.  He hasn't wanted to get out of his bed, because he knows he has to get his diaper changed.  Then he doesn't want to go BACK in bed from the rocker because he knows he's got to be changed again.  I switched him back to the Dilauded for pain (along with the Methadone) and it seems to be helping a little, at least sedating him a little more than normal.
Not something I want, but again... it's not about me.  It's about his comfort.
He hasn't stood up in well over a month.  He lays on one side of his body, in the bed and in the rocking chair... hardly wanting to move at all.  But of course every now and then, fighting hard and dishing out smiles.  God, I love this child.  

How does a mom opt to keep her son at home and watch him die?  I'm so sad.
I don't know.  I have NO clue how hard it will be.  I have no clue what it will entail.  But all I know is that my little boy deserves nothing more than to be COMFORTABLE.  And if the transplant is not an option for him, then taking him to the local hospital and sticking him with needles and IVs is definitely not an option either.  He will see Jesus when it is time and when he is tired of fighting.  
 I don't know when that will be.  And I'm trying to become okay with that.  

I'd be flat-out lying if I said that I'm not angry.  Of course I'm angry that my baby is suffering so much. 
But I'm praying A LOT.  More than I've ever prayed in my entire life.  I'm trying to understand.  I'm praying and pleading and begging to understand.  But I know and trust that I WILL understand with time.  
I think I'm struggling the most with "keeping him comfortable."  If I have to keep him home and watch him die, then why can't God at least help to make him comfortable? 
ONE DAY... I will understand. 
And like I told Dr. Tolar, I will fight to my death to cure this disease so that no other child has to just "wait to die."  And so that no other parent will ever have to knowingly watch their child's life fade away.

A sweet lady wrote this on the "Prayers for Tripp" Facebook page.
It made my heart smile.

While I prayed for this child this morning, I asked God, "How can this be? Why? This poor child is innocent and hurting! Why does this child endure this? What could possibly come from this?" He answered me, "Child, this child is made PERFECT! He is my vessel! He is the exact tool being used everyday to draw others into my kingdom! Although through your natural eye you see pain, sores, disease, hopelessness, and weakness... I see comfort, beauty, health, joy, strength and compassion! This child has brought many to me! He has brought the hard hearted to be compassionate! He has brought the depressed to have joy! He has brought many that were weak and caused them to be strong! This child has brought LOVE to so many and THIS CHILD is MY CHILD! Perfectly made indeed!"   

Thank you perfect wonderful sweet strangers... for loving my child.  
When I feel like every day is groundhog day and I feel like I can't possibly get out out bed just to "watch my child suffer" knowing I can't help him... you all give me the strength to do so one more day.  

Now, I've held off on writing this paragraph for a while now, but I have to get this off my chest.  It's time for me to educate the (very few) people who have been leaving ignorant and ugly comments on my blog.  Such as this little "preview":

"A real mother would let their child go if they were suffering so much. I would rather my child pass peacefully from this world in my arms instead of endure a lifetime of blisters, wounds and blindness just so I could selfishly keep him in this world for my benefit."

Newsflash, lady.... I cannot just take my child's life.  What would you suggest I do?  Suffocate him?  Overdose him?  Euthanize him like a dying cat??
I'm trying to write this without being ugly, because I know that what was said was out of ignorance and people that write or think these types of things do not fully understand our situation. 
The main point is that people that write these ugly things do not have sick children.  So they don't have a clue what they would do in my situation.  The last thing I am doing is using Tripp's sickness for my "benefit"- I wish I didn't have this blog about my sick child.  I wish I didn't have to fight everyday for his life.  I wish it wasn't my life-goal to educate the world about this life-threating and cruel disease.  I wish I didn't have to be "mom-inated" in contests because my child is dying.  I wish he was healthy.  I wish he could run and play like your kids do.  But he can't. 
So before you go casting stones and thinking that I'm "selfishly keeping my son alive."  
Get your facts straight.  
If I could take my son's place, I would. 
If I could take his pain away in any way I knew how, I would.  
But he's not an animal.  I cannot euthanize my sick child.  
So you (very few) people out there who call me selfish for "letting my child suffer"... 
It's not my decision when he leaves this Earth... it is God's.  But it IS my job to make him as comfortable as possible until that time comes.  And I am trying my absolute hardest to do that.  
I pray that God never gives you a sick child that you YEARN with every inch of your being to save.   

And P.S.  I forgive you for saying the ugliest things I've ever read in my life.
And I will pray for you.

But on a much brighter note, we are receiving so many ornaments that we had to get another tree!! They are flooding in.  You guys are unbelievable.  I just can't thank you enough.  
I hope everyone has a great Thanksgiving week.  
I know, along with all of you, I have MUCH to be thankful for.  
Make sure you thank God for your many blessings... 
I know I will. 


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