Rare Disease Day!

February 23, 2012 § Leave a comment

“Liam’s Lighthouse Foundation will host its 3rd annual Histiocytosis Rare Disease Day Awareness Event in New York City on February 24th and 25th, 2012. The event will begin outside The Today Show to increase awareness. We will honor our Histio warriors and angels by holding up their poster size photos for all to see that this disease is not as rare as was once thought. Additionally, the Empire State Building will be lit up in blue, the awareness color for Histio, for the event. Together, we will make a difference in the world of Histiocytosis!”

Make sure you watch the Today show this Friday and Saturday! One very proud Grandma will be holding up Jackson’s picture!

Growing up so fast!!

October 12, 2011 § Leave a comment

Well, Jackson is doing great! He is going to the clinic once a month and after his next appointment on the 21st he will start going every other month. After 2 years post transplant he will stop seeing his transplant doctor and will continue on with his immunologist. He will continue to see the immunologist for quite awhile, if not his whole life. Each appointment that he has had has gone very well. All the doctors and nurses all say he is doing outstanding with his recovery. They all love him…So much so that it was hard to find one of the nurses to give him a flu shot because no body wanted to stick him with a needle!

Jackson’s first birthday is this Friday (October 14th). I am so happy that my baby boy has made it this far and has stayed healthy after his transplant. The only bump in the road we had once he left the hospital after transplant was his port line infection, so I must say we have been very lucky (knock on wood). I remember when Jackson was first born and I would think to myself “I want you to stay my baby forever” and then once he was diagnosed it went to “I can’t wait for your first birthday”. I am sure I have posted that before but it is just something that I think about often.

We are planning a big Dr. Seuss themed birthday party for him. His Mr. Green Bird tgave me the idea (He is a Dr Seuss character named Hooey but Grandpa thought he looked more like a Mr. Green Bird. Jackson had Mr. Green Bird with him during every hospital stay. If you look through pictures during that time, you will see many with him in it….Needless to say, he is one of Jackson’s favorites!).

Jackson is all over the place these days (and is pretty much back on track developmentally)! He is crawling, or shall I say pivoting, to get where he wants to go. He’s pulling up on furniture and I am thinking he will be walking within the next few months. He’s waving, “feeding” himself (or at least trying to…There seems to be a lot of food in his lap by the end of meal time :)…He is really enjoying man n cheese and fruit cups), and now I am starting him on a sippy cup and hopefully transitioning from a bottle soon.

Jackson is starting to look less and less like a baby and more and more like a toddler every day.

Also…

September 4, 2011 § Leave a comment

I am watching the recording of the most recent episode of Children’s Med Dallas (They did a 5 episode documentary on Children’s Medical Center Dallas that is awesome. I recommend to everyone that they watch it! You can go to http://sheisdallas.com/childrens-med-dallas-documentary-premieres-this-week/ for some more information on the show. I also remember the CCBD center and Children’s posting something about where you can watch the episodes online. Once I find that link again I will post it to the blog. I remember seeing them film when Jackson had his BMT and trying to figure out what they were doing)…and the doctor was talking about the three points of his job “the clinical care, research method, and the teaching aspect of things” because Children’s Medical Center of Dallas is also a teaching hospital working with UT Southwestern. He then goes on to say that parents sometimes say “I can’t let someone learning work on my child”. I just cannot understand that logic. Would you not want someone not only learning about what is going on with your child for future generations to come, as well as having someone who is very trusted in the procedure that your child is going through, to be teaching other people how to do whatever operation it is? Obviously, anytime you child goes in for surgery it is very, very scary. But, hell, I would want the one person who is most trusted to teach future doctors how to do things to be present!

 

I cannot give enough “thank yous” to Children’s Medical Center of Dallas Center for Cancer and Blood Disorders for not only knowing what HLH was (and also realizing what Jackson had right away), but also for the compassion and kind words. These people really care. If you have a baby with HLH and can’t get to Cincinnati, then come to the CCBD at Children’s Medical Center of Dallas. They know their stuff….And the are ABSOLUTLY amazing. They saved my son’s life. And a very warm, special shout out to all of the nurses that spent time with my little man. Jackson has many, many girlfriend up on the Stem Cell wing of floor D6.

Day +141

September 4, 2011 § Leave a comment

So sorry for the late update….Well, maybe I am not so sorry now that I think about it. No update means that Jackson has been doing very well! Everyday I am amazed at how well my baby boy is doing. It feels so strange to even be calling him a baby these days! He continues to grow and surprise me everyday! He will be a one year old in less than 2 months! Sorry for so many exclamation points but I am just SO happy that he is doing SO well!!

Jackson update:

Jackson had his PICC line removed and after 3 weeks of training and 1 at home nurse coming to the house to help me, I can now proudly say that I gave him his first at home infusion of IVIG (with a little help from Aunt KiKi and Aunt LiLi!). Doctor Aquino told me awhile back that the only reason that Jackson had a PICC line now was for the IVIG. He said Jackson’s PICC line would be able to be removed as long as I felt comfortable giving him infusion….At first it was a bit scary. I felt like maybe I wouldn’t be able to handle it. But after the first few weeks of watching and assisting nurses with the infusion, I am now very confident in the whole “giving Jackson the infusion” process. I tend to still get a bit overwhelmed after the infusion is set up and going. overwhelmed may not be the right word..Perhaps emotional would be better.

I believe I become emotional because I just never, EVER expected to be giving my baby infusions. Let alone, infusions to help his immune system because of a BMT…Which happened to be the only cure for the horrible disease that he had….

What a flood of emotion I just had. There are no words. My baby is “healthy” for what he has gone through. I remember before he was diagnosed I would look at him and just think “I don’t want you to ever grow up. I want you to be my little baby forever”, which of course I knew would never happen. But I believe every parent wants there little tiny baby forever. And then once he was diagnosed with HLH it went from me wanting him to stay my baby forever to “I can’t wait till your first birthday”, “I can’t wait till you are walking”, “I can’t wait till you’re driving” (OMG! Scary thought…Mom, I know where you were coming from now when I first started driving….What a .very.scary. thought…), “I can’t wait till you have a family of your own” etc.

I’m not really sure where I am going with all this rambling….Jackson is healthy. And that is.all.that.matters.

Day +100!

July 23, 2011 § Leave a comment

I cannot believe that Jackson is at day +100! Seriously. Cannot. Believe. It. I really have no words right now. I am SO proud of my little boy. He continues to amaze me everyday.

The very first picture of Jackson. This is one of my very favorite pictures ever.

First outfit!

Jackson and I.

First full day home.

Catching some rays.

First halloween. He loved it 🙂

First Thanksgiving

Taking a nap with Grandpa.

Jackson's first long trip to the ER. Thank you so much to Auntie Mary Ann for being there with us. And thank you to Uncle Greg for bringing us breakfast!

Not feeling very good. What's going on little guy?

Outta the ER and happy to be in my bath tub!

Routine check up after first ER visit. They wanted to make sure all of Jackson's blood levels were back to normal. As we were in the waiting room I said to my mom, "I never expected to be bringing my baby to an oncologist/hemotologist".

Jackson was admitted into the hospital after his check up. His blood levels were still not normal. He was in the hospital until Christmas eve. He was diagnosed with a urinary tract infection and sent home with antibiotics.

Jackson was discharged in time for him to be home for his first Christmas.

But he ended up back in the ER for a very high fever that would not go away.

And back home yet again.

Jackson went to the ER one more time and received his first few blood transfusions. They then admitted him to the PICU after he came in with low oxygen levels and low blood counts.

In Grandma's arms. Notice how much his belly button sticks out from his swollen spleen and liver. He spent his first New Year in the PICU.

A sweet visit with Aunt Luanne. We are so grateful for all of our wonderful "family".

Uncle Chirs, Jackson, and I. Still waiting for a diagnosis.

Diagnosis is HLH. Dr. Leavey and Dr. Ledger came in and talked to us about what this was and what the treatment would be. It was very hard to listen to the doctors while they explained to me what the diagnosis means. I will never forget the feeling I had. I don't think anyone in the room at the time will ever forget it either...Thank you Aunt Joey for being there for me that night.

On his way to get his PICC line in.

Finally home! It wasn't new years but he still had to wear his shirt now that there were no IVs hooked up to him!

First in clinic chemo. One lady in the infusion room told me that she had never heard of treating HLH with chemo and recommended that I get a second opinion because "that doesn't sound right" (Which after all the research I have done on HLH, I have never heard of a doctor NOT giving chemo to treat HLH). Oh, the things that I would say to her now.

First time trying cereal. Look at those cheeks...Steroids are starting to catch up with him.

Another round of chemo. Check out those steroid cheeks.

Cool dude!

Playin' the piano.

Sleeping at a check up.

Back in the hospital for a fever.

Steroids were NOT Jackson's friend. He was still darn cute though!

Always SO happy.

 

"I hate steroids mommy!"

 

Aunt Lindsay holding Jackson pre transplant.

"Ah I HATE PT!" PT worked with Jackson throughout his transplant stay.

Sleepy baby

Relaxing with Aunt Joey

Nurse Shelby with the cord blood.

Transplant day. Jackson slept through the whole process!

Getting every last drop of goodness!

After he got his central line removed.

Wonderful day! Leaving the hospital! Love every single staff member on D6!

First bath with no wires...No central line...No PICC line. So much fun!

Superman Jackson at a post transplant check up

Very first time in his pool! He loves it!

Jackson with his beads. He has around 400!

 

 

 

Day +91!

July 15, 2011 § 1 Comment

I cannot believe that Jackson is almost to day +100! It seems like just yesterday that he was getting his transplant. Jackson had a check up today. Everything went very well. Counts are all great! They even took him off one of his blood pressure meds and his magnesium. Which is great because we think that the magnesium was making Jackson throw up his meds so HOPEFULLY this helps with that.

I can’t remember if I posted about us leaving the Ronald McDonald house so if not we are finally back home and enjoying it very much. It’s so nice being back. Also cannot remember if I posted about Jackson getting his PICC line out…I should probably reread past posts before I post another…oh well. Anyways, he can now get in the pool and absolutely loves it.

Also got the go ahead from the doctors today for Jackson to start eating some fresh fruits. Right now he can only have fruits with a peel on them, such as bananas, but that is just fine. He’s still going down on his weight so hopefully this will help a bit. We are going to try some avocado tomorrow!

At his next appointment I will be getting more information on the shots that I will need to start giving him. We just need to get everything settled with insurance and then everything will be good to go. The shots are used in replace of his IVIG.

Jackson is officially 9 months and 1 day old 🙂

Liam’s Lighthouse Foundation

June 28, 2011 § 1 Comment

Warning: I am not much of a writer. I have been doing my best with this blog to get everything that I want to say out to all of you with out it being confusing. So I apologize if I ramble on about the topics I am about to talk…er type about. Each topic is very important to me and I tend to ramble….

 

Liam’s Lighthouse Foundation is a non-profit organization that provides educational material and awareness of HLH. The woman who started this organization had a child, Liam, who was diagnosed with HLH at 14 months. At 4 months of age Liam began spiking fevers which came every month thereafter like clockwork. Even after 10 months of going through this, there was still no diagnosis even after seeing a pediatric hemotologist/oncologist. Liam was not diagnosed with HLH until he was 14 months of age. After Liam’s diagnosis they decided to take him to Cincinnati Children’s Hospital where he was under the care of HLH expert Dr. Filipovich (This is the doctor that Jackson’s transplant doctor and team of NPs talk to about Jackson’s progress). Liam was on the HLH-2004 protocol much longer then it suggests because they were unable to find a suitable BMT donor. Liam had his transplant via cord blood on July 30, 2009 and lost his life on day +41.  For more information on Liam and Liam’s Lighthouse Foundation you can go to www.liamslighthousefoundation.org.

With a disease like HLH it is very important that diagnosis happens quickly. Typically, a child with HLH that goes undiagnosed has 2 months to live. Liam had to be on the HLH protocol longer then expected because of a lack of a proper bone marrow match. PLEASE consider being a donor. You can do this by going to www.marrow.com. The process is pretty painless. They will send you a package with everything you need. To get on the donor list you need to be between the ages of 18 and 60 and all it takes is a swab of the cheek. Typically every 1 in 540 people will go on to donate to a patient. Every person that signs up to do this is an extra chance to save someone’s life. Also, if you are of an ethnic background it is most important than ever for you to sign up as it is harder for patients with ethnic/mixed races to find a match. We were lucky as Jackson had a cord blood match as well as an adult donor. This donor did in fact take time out of their day to go through some pre donation tests even though they were ended up not being needed. If Jackson is ever going to need another BMT then this adult donor will be needed. Even if this adult donor is never needed in Jackson’s life, I am still so very grateful for them and could never imagine any way of coming up with a ‘thank you’ big enough for them.

Also as I mentioned in a previous post, there will be a 5k walk/run on September 24, 2011 benefiting Heroes for Children. This organization has helped out my family along with many, many other families around Texas with children who are going through cancer treatments. Although, HLH is not a cancer, it is mostly treated as such and they were very generous to us. If you would like to join Team Jackson then you can go to http://hfc.convio.net/site/TR/HFC5KampFunRun/General?team_id=1025&pg=team&fr_id=1040. You can even be a virtual runner! Let’s go Team Jackson!