Jackson has moved his personal blog and updates to Facebook. You can read more about him, read his updates and even leave comments on https://www.facebook.com/savejax.
Hope to see you all on Facebook and thank you for continuing to follow our baby.
From Jackson’s mother in Minnesota:
Packing some things to ship out tomorrow in hopes of being able to go back home to NY! Our flight has been delayed for a few days as a result of storm Nemo. We will be flying out on Sunday, fingers crossed. I am hoping that all of my friends and family are safe and remain safe! It is going to be a winter wonderland when Jax and I get back home. It has been quite a long, long journey for Jax and this trip was exhausting..it had many ups and downs..but Jax’s progress with his EB never fails. Ultimately, he is safe, skin is better than what it used to be, he is still living, growing and exploring more each and everyday. And for that I am thankful! But one thing is for sure, I cannot wait to be back home! I miss my family, friends, and my incredible boyfriend who has been keeping up the home while Jax and I were away…Jax’s family can’t wait to see him either, we will get to celebrate Grammy’s birthday as soon as we are home…her one wish was to have all of her grandkids together to celebrate HER…so this will happen!
Jackson is safely in Minnesota for his last transplant.
Update Jackson Baldwin per Jessica Valik: 42 minutes ago via Samsung Mobile · ..
Todays plan-MRI of Jaxs brain to check on the fluid levels and the Burr hole that was surgically done in November that released more fluid then consultation following. Then lab work, then we meet with the infamous Dr.Tolar, the man who not only transplanted Jax, but gave him new life! Excited, nervous, anxious.And this momma is ready to get the show on the road! Please keep Jax in your thoughts and pray for good news
Update from Facebook
Packing, packing and more packing…I hope I do not forget anything…tomorrow Jax and I will be in Minnesota, snuggled in our hotel room, preparing ourselves for our busy, busy weeks ahead full of surgeries, check-ups, and 6 month post transplant procedures…excited, nervous, and anxious all at once. I can’t wait to get the results to see how much of Jax’s donor’s cells he is now growing! ..I am dreading the plane ride though..it is going to be difficult as it will be just Jax and I going, along with all of our belongings + suitcase full of bandages + medication bag + feeding pump + stroller + soft blankets and padding..and so on…and most importantly Jax’s DVD player and spongebob/little einsteins to keep him occipied on the plane ride itself, praying for a smooth ride, with no messy diaper while en-route! I know the staff was extremely accomadating last time we made the trip, hope I can recruit a couple of extra hands again to help us out. Will keep everyone posted as we head out to Minnesota at 9 am!
Many of you have been asking if Jax made it home for Christmas and he did. He spent the holiday with his family. His mother posted the following update on his Facebook page on Monday, January 21st.
Alrightty, time to spill the beans…Jax and I are heading back to Minnesota for more treatment along with his 6 month post transplant follow-up that will include a few surgeries. We are on standby with the Corporate Angel Network to see if they can match us up with a flight out to MN on Monday..if I do not hear from them then we will fly out Wednesday and return Feb. 10th. I am nervous to be taking Jax out there with this cold weather especially being even colder in MN. I am hoping that we will be able to get a room at the Ronald McDonald House, rather than staying in a hotel for two weeks and commuting to and from the hospital via taxi cab. If everything goes right, this should be Jax’s last dose of more of his Donor’s cells!! Jax will be tested again to see how much of his donor’s cells he has engrafted, I am so anxious to find out! Of course I will keep updating on our trip out to MN! Thank-you everyone for continuing to support Jax and keep him in your thoughts!
Where do I even begin to start?? There has been so many changes with Jax. Lets start at he is 124 days post Transplant!! Where did time go by? I cannot even believe that I just had to schedule his 6 month follow up appointment already coming up soon. Last time I updated the plan was to be back home in NY by my birthday, November 17th, this plan has changed, and we are still in Minnesota. The new temporary date to come home is around December 11th. The reason being is that Jax will need surgery sooner than expected to place a permanent shunt. The fluid on his brain (unrelated to EB) has increased by quite a bit. The Neurologist is worried that with the amount of fluid on his brain may have already caused some brain damage, but there is no true way to tell quite yet. The doctors do know that Jax is a little developmentaly delayed and is not meeting his milestones. There could be many reasons for this, as I am sure of chemotherapy played some sort of role in the delays, along with the cruel effects of EB, and the fluid on his brain. …But with all this being said, I am not selfish and am so very thankful to still have Jax with me, and is continuing to fight each and everyday. Jax will have his shunt placed November 26th and will be admitted into the hospital for a few days to recover from his brain surgery.
While Jax is recovering from his surgery at that time, he will also receive his second dose of donor cells. This is needed to “boost” the already transplanted donor cells to multiply and continue to grow to help with the fight against EB. I am very very excited to announce that Jax’s engraftment is now at 25%!! Before his first boost of donor cells about 1 month ago, Jax’s engraftment was declining and was nearing 14%. Now his body has engrafted more of the donor’s cells I am beginning to see a marked difference in his skin! The Bone Marrow Transplant is still by no means a “Cure” but a pretty damn good treatment! I am able to leave more of Jax’s skin open. Jax’s skin still blisters and always will without an actual Cure. And as my birthday approaches, my only wish is to encourage each and every person that I know to spread the word of EB; tell at least one other person…this could make all the difference.
I would also like to say that Jax is not the proud new owner of a sharp pair of baby blue eye glasses! Jax is able to see more now! His eyes have always been a troublesome area as far as the toll that EB has taken on him. Unfortunately Jax’s eyes have blistered so much and has left a great amount of scar tissue on his cornea which has damaged his vision. The good news is that this can be fixed…another surgery to remove the scar tissue and dialate the opening of his pupil to see more. Additionally Jax will have another surgery on his left eye to widen his eyelid due to it being pretty weak from the lack of vision. So with Jax’s new and very powerful eye glasses he can focus on things now and learn to develop his vision, and it is so great to watch Jax explore the world and show his curiosity.
I am still getting to know my boy, but with each new day I can see more and more of his personality coming out. He is such a strong boy, and is an incredible little fighter. It does sadden me to see how much my boy has to endure as part of his EB. I am really starting to dread dressing changes and baths. It hurts my heart to have to put my baby through the absolute torture of changing his dressings as it is getting more and more difficult to preform the 3 hour long bath+dressing change. Jax is disliking it more often too as he screams through it, and hates to be held down to put on his “new skin.” I only hope that Jax’s body will produce more of his donor’s cells and will help his skin to heal and be just a little more stronger and less fragile. This is why we need to spread the word of EB, and find a cure.
I am going to end this update here as it is getting late and both Jax and I need sleep. Please keep Jax in your thoughts and keep all fingers crossed that we will be home for Christmas, and back with our friends and family. Good night, and thank-you for continuing to support Jackson and following his story.
Wow, It literally feels like forever since I had posted. There is SO much to tell, Jax has had so many changes, the good, the bad, and the ugly. The last time I posted, there was talk about Jax going back to NY for 1 week. Well we did make it there, and we had a blast. There were so many, many feelings and emotions going through my head, and I can’t even begin to imagine how Jax felt. There were somevery deep emotions that I was able to let loose with my family, and above all-Jax and I so very much needed that trip back home! I was so relieved to let some of my emotions that have been bottled up inside for months on end out…with my close family! My older brothers especially! I am so very thankful for the truely amazing and supportive family that Jax and I have! It was so nice to see my family and friends and to finally update the media and just talk with them about Jax’s long journey. Everyone was so patient with us, giving us our space, helping out with everything, cleaning for us, cooking, comversating, and just simply being there! I had the pleasure of watching our family finally able to interact with Jax on a higher level, and not be SO scared, I didn’t see as much fear in everyone’s eyes…nor did I see much sadness and nervousness…for that, I am greatful! …I was able to see my nieces that I have missed SO much! I Love those girls! …and my newest baby niece that I finally got to meet, she is just how I had pictured…cute as a button and teeny tiny! ..Also, I was able to reconnect with an old friend who has opened up his life to Jax and I, I am so very thankful for him, and his acceptance too all the craziness in mine and Jax’s lives…who accepts all and is more than willing and able to lend a much needed shoulder to lean on and an ear to hear all that I have to say.
It’s safe to say that Jax and I had a great week while visiting our family back in NY. I am a little disappointed to say that Jax did not spend anytime with his own father, as I have said in the past his father is not involved in his care what-so-ever, however I suppose I just would have thought that he may have wanted to see Jax…so I am a little set back by that, I am not sure what to think of that. ..
Anyways, I try not to dwell on the negative, as Jax certainly does not need that and neither do I! So, we flew back to Minnesota on Monday, the 15th. It was a great trip and ended very well. Jax was terrific on the plane, and I got to spread tons of EB awareness while on the trip, I think everyone on the plane was listening to me while explaining Jax’s condition and just some on his struggles that he has had to go through to be where he is right now. Everyone was so pleasant and helped me with our carry-on bags…I had no idea how trabveling with an infant requires tons of luggage and bags, not to mention traveling with an infant with EB and post transplant! WOW! It wasn’t as bad as I thought it was going to be, I think I got a pretty good work out with lugging everything to and from the car about 3 times with a stroller in one hand, it was pretty hilarious I’m sure. So, we got back in MN at 8:30 am, and we arrived back at the hospital by 9:30 for the first of several appointments. It ended with two very tired and exhausted troopers, but we made it through the day. Once back at the Ronald McDonald House, I was able to see the few families that are still there, that was a nice treat! the amazing Mr.Eleafar who is an 11 year old boy with Junctional EB. He is such a gentleman, a truely beautiful person indise and out! He calls Jax his “sweet little angel.” There is a special place in my heart for this little fella, and his strong momma!
Once back to RMH, Jax sort of developed a fever, which turned into a high fever of 102.3. I have to admit, I was a bit scared..I wasn’t sure if Jax had a skin infection or if it was internally, or maybe something he may have caught while traveling. So, I brought him right into the hospital and he was admitted right away. He was put on powerful IV antibiotics, and the whole “sha-bang.” The routine procedures of going through his 4 page list of meds with the docs, going over his symptoms, taking blood cultures, skin cultures, dressing changes…and pumps, IV poles…etc, etc.. So Today, Jax was having a bit of a hard time maintaining the oxygen level in his blood, he was resting; but was just TOO comfortable. So he had a little oxygen to help him along. Eventually he was taken off of it once he woke up hours later. He received many, many IV antibiotics, infusions galore. And other infusions as well including IVIG which will help boost his immune system since blood tests revealed his immune system is still pretty sluggish and isn’t quite where it should be by now. …
The next thing I would like to update on is with Jax’s engraftment. Jax did engraft, meaning his body did accept the transplant; the donor’s cells. However, his engraftment level, meaning how much of the donor’s cells his body has accepted and reproduced is quite low…his body only engrafted 14% of the donor’s cells. A perfect engraftment is 100%, but with EB and how Dr.Tolar had wrote the protocal and procedure, EB patients only need 30% engraftment to make a true difference and to “heal” if you will, and to “treat” EB. Since this is not a cure, just a treatment I need to keep repeating this in my head. I guess I sort of expected a little more, but I do not want to be selfish in thinking like that. So, what does this all mean? This means that at first Jax’s engraftment was 34%, and it has been declining ever since, all Transplants are different, and every patient engrafts differently, including patients with EB, they engraft at different levels too. So I am just going to talk about Jax. His engraftment is at 14% as of lets say 1 month ago. He has been re-tested last Monday and we will hopefully get some results by this Friday. I am hoping that his engraftment has remained the same and has not dipped down again…my worst fear is that he will loose his engraftment and we will have to go through this entire BMT process yet again. I am praying that this is not the case. Dr.Tolar has made the decision based on Jax’s previous engraftment levels and their trends, he wants to go ahead with the Donor T-cell injections or called DLI. This is done similiar to a blood transfusion, and should not hurt or cause too much pain. It is done once a month and Dr.Tolar feels it is necessary for 5 injections…this is ideally supposed to boost his engraftment and make the donor’s cells multiply and grow more so his engraftment will be higher. If this does not help boost, the our other option would be to re-transplant. It is bitter sweet, the way I see it is that Jax has made it this far, if it weren’t for the Transplant in the first place, Jax would not be here. It has gotten him this far, and as long as I do not hear the words “there is nothing else we can do” then I am ok. The positive part is that there is still more that we can do to Save my son’s life. The negative part…(although I feel there is alot of negative parts) is that we may have to start from square one again. I know that it would be quite the set back; but I still remain very hopeful! I will always, always keep fighting for my son, and of course be there every step of the way with him! If we end up repeating his BMT, then I am there; It has to be done, so I am definitely okay with that..if it means to make damn sure that my son will live to be my age one day, then I am SO there! I am the one who has been chosen to quide Jax and point him in the right direction, and to fight for him…so that is exactly what I will do! …
So, for the best news yet….Jax’s Doctor’s have been talking more and more about releasing Jax back to NY semi-permanently! They are trying to come up with an exact date, but Jax still needs a few things before he can go. So, I am going to say that Jax will be home by my birthday, November 17th!! This is by far the BEST birthday present! Of course, there are things that we are obligated to do, responsibilities that I have to maintain..these would be to take Jax back out to MN once a month for a few days for more Donor cells, take Jax to Albany Med’s oncology floor where he will need to get his labs drawn/follow-up care/transfusions..etc..every Monday/Wednesday/Friday; he will also have physical, occupational and speech therapists come into our home daily to work with Jax; and of course everything else that may happen and he would need to be brought to Albany Med for his care (which is about an hour away). He will also be receiving more “specialized” care at an EB clinic in NYC, about 3-4 hours away about twice a month for 3-5 days each.
…Then that leaves Jax with his neurologic issues. He has quite a significant amount of fluid on his brain, this is called Subdural Hygromas. So in six or so months from now if not sooner Jax will be admitted into Albany Med once again and will undergo brain surgery to place a temporary external shunt into his brain to release the fluid, and then place a monitor to measure the pressure that is/has been built up in his brain. Of course there are very serious risks to this procedure and the Hygromas itself. The doctors have scared me to death in explaining the importance of needing to release the fluid, it could cause or have already caused alot of damage…irreversible damage.
The important thing is that I still have Jax, he is still living, breathing..and as far as I am concerned..healthy and perfect!
It is late and I need sleep! The doctor’s are suggesting on keeping Jax in the hospital until Friday or Monday-given that Jax does not spike another fever greater than 100.4. Then on Friday Jax will receive his first DLI, which is good news! I am hoping to get all of the results form the blood tests that were drawn for his +100 Day mark, that would provide tons of information and the current engraftment level.
I will continue to update as I get more information. Thank-you for reading and continuing to follow and support my son on his journey!
I want to send out a very sincere “thank-you” to each and every single person who has been following my son’s Journey. It has been a very long road, and certainly Jax had his ups and downs. I am so greatful to be back home with my family and friends, Jax was missed by all!
Jax is back home until the 15th of October and then will return to Minnesota to continue treatment until it is determined that Jax is healthy enough to be released back home once and for all.
Jax was in the news for his first homecoming and I would like to share the three pieces!
A wonderful piece done through one of our local news stations at Channel 6 news:
http://cbs6albany.com/news/top-stories/stories/jackson-baldwin-home-again-3523.shtml
Ynn also aired a follow up story on Jax:
http://capitalregion.ynn.com/content/603358/baby-jax-returns-home/
Fox 23 news did a beautiful update on Jax:
Once again Thank-you to all for your continued support!
Two new video’s of Jax making progress and a couple of “firsts.” I am SO proud of my son, everyday he continues to amaze me. It’s the smallest of things that leave a huge impact, I am so glad to be making memories with my son!
Enjoy the videos!!
Jax says “ma ma” for the first time!
http://www.youtube.com/watch?v=ORt8QodC6cI&feature=youtu.be
Jax claps all by himself for the first time!
http://www.youtube.com/watch?v=ylkdOh1ZjB4&feature=youtu.be
Sooooo…Yesterday was an interesting day..when I woke up, I could not even get out of my bed due to my back! Ughhh, is this really happening right now? I’ve lways had a little bit of back pain and when I was pregnant with Jax it only made it worse. Then after I had Jackson my back has been really sore from doing all the moving with Jax, picking him up and down, up and down..and physical therapy and so on. 2 days ago I went to pick Jax up and I twisted my back and it hurt alot, I thought it would go away by morning, but I was so wrong. I definitely pulled a few muscles in my lower back. So, I have been stuck in bed since then..I went to the emergency department at the hospital and I was prescribed 3 different muscle relaxers along with a shot of pain meds directly into my lower back. This is aweful, I can’t really do much of anything, and about Jax…I cannot pick him up at all, it is a struggle to even change his diaper and holding his legs up..I couldn’t take Jax to his appointment this morning, my mom had to due to the fact that I cannot walk. I am greatful to have her here to help but she is limited as to how much she can do right now because she had surgery on both of her arms for cubital tunnel syndrome. I set up an appointment for a follow up from the ED, the doctor suggested that I should probably get more injections to relieve some pain and inflammation. So I hope that my back will get better soon.
Jax has a few things coming up in the near future…he WAS tested for engraftment levels on Monday, so hopefully tomorrow we will get results if not then Monday. I am praying, praying, and praying that his levels went up. Jax is going to need some of his donor’s T-cells to help the donor cells in his body to multiply, he will receive 3-5 doses altogether and 1 dose per month. So we will be here for a while longer. I am going to try to plan a trip to go back to New York for 3 days for Christmas and then come back here after. Additionally Jax will go into the OR on September 19th for skin biopsies, pictures, blister testing, and an MRI. On September 20th Jax is scheduled to have his shunt placed by the neurologist, however I am not sure if that is actually going to happen because Dr.Tolar is concerned that it is too close after Jax’s BMT to be operating on his brain, so Dr.Tolar and the neurologist will have a conversation and then we will see what the outcome is. Then on September 26th Jax will be fitted for glasses as his eyes are getting worse each and everytime be blisters on them. He has very little eyesight in his left eye due to repeated blistering and scarring so Jax’s right eye is semi-permanently dialated to strengthen his left eye. He also is near-sighted and has an astigmatism in his left eye as well. So …Jax has alot going on with him and the surgery to place his shunt is still up in the air, I am terrified but I have faith in his doctors and I know my son is a fighter and will not give up. Hang in there Jax, and continue to defy all odds.
I also want to say a special thank-you to Miss Andrea Ness for getting Jax a gait trainer, I cannot wait to see him walking in it. Andrea, you are an angel…We send our love out to you! I said many, many more thank-you’s out to every single person who is and has been supporting Jax throughout his Journey!
