Updates are added at the bottom of this page:
Photo's by: Christie Zink
Follow this amazing story of Jackson & his BMT process, Please keep them all in your hearts
This beautiful little guy arrived in minnesota last night ready for the preliminary tests towards his BMT. For those that don't know Jacksons story, here's a little catch up.....
Jackson was born on August 20, 2011 in a small town in upstate New York
in a small hospital at the foothills of the Adirondack Mountains. He was
born using a C section procedure; and there were no problems detected
prior to his birth. The happiness at a new life born into our family was
not to last very long. Shortly after his birth, doctors began to
express concern because Jackson was born with missing skin on a few of
his fingers, 2 big blood blisters on his scrotum, and blisters on his
lips and the inside of his mouth and throat.
The next morning, Jackson was transferred to the PICU at Albany Medical
Center (about 45 miles away) but I wasn’t able to go with him because I
was still healing from my c-section and had developed a high fever. I
was not able to see my baby until 4 days later and that is when I
finally got to officially hold him for the first time!
..."My family fought really hard to get my procedure approved by NYS
Medicaid since it was caught up in the system for months! On Tuesday,
March 13, 2012, we launched this web site and the ‘Save Jax’ campaign
and it worked! With all of your support, along with my great lawmakers
and local news media, my story and its urgency became front and center,
and my family was informed on Friday, March 16, that my bone marrow
transplant will be covered by New York State Medicaid. That following
week, University of Minnesota informed us that the hospital, and all
contracting groups have each quickly worked out agreements to accept our
insurance and I am now heading down there"....
So, Medicaid has approved of Jax’s initial consultation and the bone
marrow transplant itself! I am forever greatful for this. I have
recently found out that the saints from Corporate Angels are willing to
help fly Jax to Minnsota for the initial consult. This is truely a
blessing. My family and I have been working together with this company
to come up with a date to fly us to and from MN. So the dates that we
have come up with so far are, daparting on April 5th and returning on
April 13th. We are still working on where we will be staying during this
week, but I have high hopes.
The initial consult, from my understanding will include: another biopsy from Jax’s skin…unfortunately this will be his 4th biopsy, but I am confident in this one, a 3-4 day “work up,” which will include many doctors from various dicsiplines to examine and evaluate Jax to come up with enough information to present to the Amplatz Children’s Hospital at the University of Minnesota’s external advisory panel in hopes that they will approve of Jax’s treatment. This panel has to come to an agreement that Jax is a good candidate for a bone marrow transplant. I have been told by a credible source that there is no reason why the panal would not approve!
The initial consult, from my understanding will include: another biopsy from Jax’s skin…unfortunately this will be his 4th biopsy, but I am confident in this one, a 3-4 day “work up,” which will include many doctors from various dicsiplines to examine and evaluate Jax to come up with enough information to present to the Amplatz Children’s Hospital at the University of Minnesota’s external advisory panel in hopes that they will approve of Jax’s treatment. This panel has to come to an agreement that Jax is a good candidate for a bone marrow transplant. I have been told by a credible source that there is no reason why the panal would not approve!
Keep this little guy in your thoughts and will update as i get information on his progress.
Happy thoughts x
Update on our little guy:
From Jax's Family:
I got an Update on Jackson Baldwin yesterday. It is
not a lot of news, but i know how many are following him and love him,
so I will tell you what I know.
Jax is still in Minnesota. He is
undergoing tests and scans to determine the extent that EB has affected
his internal organs. He is also going to meet his world famous doctor,
Dr Tolar, today.
Plans are to eventually place a double port so that he might be better able to receive his infusions.
Plans are to eventually place a double port so that he might be better able to receive his infusions.
Once the tests are
complete and the plan is in place, Jax can move on to the next step.
Please keep this little guy in your prayers.
(Another update from Jax's Mommy)
Ok, so after Jax's surgery, he was admitted into the
hospital. In preparation for the BMT, Jax had a CT scan done of his
chest, and adenoids. The Doctor came into Jax's room late last night to
tell us that the CT scan came back showing fluid in Jax's lungs, she is
thinking Jax has pneumonia.
He is now on a very strong dose of anti-biotics. This is a set back because it ill delay Jax's BMT process even more. So, the doctor's are doing their rounds right now and discussing their next course of action. I am not sure if Jax will be discharged today or not...I will continue to update once we find out what the plan is.
He is now on a very strong dose of anti-biotics. This is a set back because it ill delay Jax's BMT process even more. So, the doctor's are doing their rounds right now and discussing their next course of action. I am not sure if Jax will be discharged today or not...I will continue to update once we find out what the plan is.
(Update from Jax's Grandma Lynn)
Update from yesterday's explorative procedures in the OR here in Minnesota.....
They changed his feeding tube to a Mickey Button from the Bard button, couldn't get a scope up into his esophagus, but went u p with a wire device, things seemed okay there. They did a CT scan of his chest and adenoids, and did 7 skin biopsies. He was admitted for observation and it was found that he has developed pneumonia. He will be released but has to stay local, since the closest hospital in NY that will see him is Morgan Stanley in NYC. We can go home after his lungs clear up as long as there are no other immediate concerns.
Dr. Tolar said that Jax will be BMT #21 and is an excellent candidate so far. He will be sending all the documentation, test results, etc accumulated this week to 3 specialists (one each in London, France and China). Each will evaluate him and give report/recommendations. He assured us that while he will consider their input, it is ultimately his decision to do the bmt on Jax. He said that considering the extent of Jax's EB, Jax is probably one of the better (and maybe even the best) cared for child he has worked with and commended Jess for her care of Jax, her persistency and her understanding of EB and the bmt process (pros and cons). He said that in his estimation, we should tentatively expext to be back here in MN mid to end of May to begin the inpatient process. He said he sees no reason to do a central line before that time (thank God!!) Other than that... our poor little guy is pretty darn sore.
Too cute not to share........
I spy with my little eyes.....2 tiny teeth, surprise surprise!!
This would be the culprit in why Jax and I are going to Albany Med Hospital. This picture was taken during last nights dressing changes...Clear sign on infection, all the text book symptoms, gooey green and a TON of bright yellow discharge....I called Jax's doctor and he told us to come in asap because he is concerned about sepsis...We do not need this right now, Jax's health cannot be compromised prior to his BMT....
Jackson is at Albany Med again with an infection. Let's call up our prayer Army for our baby.
IMPORTANT Update on Jackson
Minnesota has found a perfect match for his transplant!!
Minimum match quota is is 8/8, and Jax's donor is 12/12!
We are Singing praises today friends.
Posted by Jessica:
http://www.fox23news.com/news/local/story/Donors-found-for-Johnstown-baby/G9TxHIHx3E2aalndDFwAeQ.cspx
Updates on Jax's BMT as i get them.......
We arrived to Minnesota early Sunday morning, around 5 am, we were VERY fortunate to be able to stay at the Ronald Mc Donald House! Jax, grammy and I are all rested up and ready for Jax's back-to-back appointments today and the rest of the week. He will undergo a couple more surgeries and procedures starting today to place a port directly into his main artery to his heart, some imaging, and so on. Thank-you everyone for your continued support and prayers....we are still keeping up with the video blog, I have to purchase a memory card, film, and the very first video will hopefully be up tonight on Jax's blog on www.helpjackson.org ..
So, so, sooooo Tired!! Jax and Grammy are both sleeping soundly after a VERY long day!. 7 appointments today so we are wiped out! Jax will have his surgery tomorrow for his central line, this is a port that will be surgically placed directly into his main artery in his heart, I am SOOOO nervous! I need to try and get some rest myself too...Jax's surgery is tomorrow morning. Will update on how he is doing after.
Jax's surgery went well! It is a little intimidating to see the end result of 2 ports hanging from the side of his chest, but I am sure it will get better with time. Jax has been admitted just overnight to moniter him after the anestheia that was used from earlier today, also to teach me how to care for Jax's new central line. ....Jax is currently as comfortable as possible and the doctors are actually using his new port. We were very fortunate to see the famous Dr.Tolar today after Jax was admitted, we gave him a Save Jax T-shirt, he was so excited about his "gift."...Jax has more appointments scheduled for the rest of the week and the beginning of next week. He will begin Chemotherapy, radiation and other medications June 15th, and the new day of transplant in June 22nd! This is coming up very quick, and I am very very happy to finally be here in MN!
On a different note, I am running dangerously low on supplies, I feel just terrible....we are waiting for the shipment to arrive from NY, which should be here in a few days, but I am just not sure if we will have enough until then....Does ANYONE have these extra supplies, 1,2,3,4 inch. rolled gauze, vaseline gauze, aquaphor, surgilast, telfa, mepilex lite, mepilex border, mepilex transfer and plain mepilex, mepitel. Please send me a pm if you have any extra supplies. Thank-you.
Jaxs consent form for his bone marrow/stem cell transplant, signed and dated june 8, 2012!!
After jaxs surgery
Only 3 more days til Jax's treatment begins...
pls keep him in your thoughts & prayers {)i(}
pls keep him in your thoughts & prayers {)i(}
http://www.youtube.com/watch?v=N81_KYZFdqU
Christie Zink arrived to support Jax & family
I need to share this photo of my son as proof why we need to spread EB awareness! This picture is not only 2 open blisters, but this is the result of a doctor who was clearly not educated on EB, and just would absolutely not listen to me when I was explaining what he can and cannot do to my childs skin, and when I clearly explained how he can make physical contact with Jax if he needed to...These wounds were not noted, and apparently went un-noticed until I discovered these in the PACU, uncovered, and very fresh. After questioning the rude doctor, his respose was, and I kid you not, "It wasn't me, I didn't do it." He also refused to allow Jax any pain meds after doing this to him. ..I had also questioned the nurse practitioner and she shed a little light as to what she thought happened which involved this particular doctor. ...I took all the necessary steps to report this incident, word of this mishap also got to Dr.Tolar himself, as you can imagine, he was not pleased one bit, he had explained to me that as soon as he got wind of what had happened he took immediate action and re-assured me that this will never happen again, not only to Jax, but any other future EB patient.
Posted by Jax's mum, Jessica:
Here is an update...it has been a very tough day for us here at RMH, We have gotten close to a family here and this morning their little girl has passed away. I feel for the family but don't truely know what to say other than I'm sorry. On a different note, Jax turned 10 months old today, another month...another milestone, he is beating the odds! My strong little boy, Jackson Baldwin, you never seem to let me down, I am so proud of you! Jackson got his first hair cut Monday and it went very well to my surprise, spongebob is one heck of a distraction! On Tuesday a volunteer photographer came to RMH and took our pictures, I can't wait to see how they turn out, we will get them here tomorrow. Today Jax sat up on his own and kept on practicing ALL day! He had a very good day except when I received a phone call from Jax's doctor saying that his cultures came back from the area where the doctor caused the trauma to his neck positive for a staph infection, also I was right about Jax's area aroung his feeding tube, that it also infected. So, a couple more medications to add onto the list. I do believe that I am just completed disgusted with that certain doctor that was involved with the incident of Jax's neck. I was also informed that the incident report has made it's way to hospital lawyers, this puts me at a little ease. The results from the lung biopsy still has not came back yet, I am strting to get a little nervous. ...We did get some more good news, Jax will be admitted into the hospital July 6th and start Chemotherapy and radiation, then on the 13th of July will be Jax's Bone Marrow Transplant. This means that the donor has agreed to still donate her marrow. Thank-you Jesus!! I am still asking everyone to keep Charlie Knuth in your prayers as he has been moved to the PICU and is still struggling. He has EB and has had his transplant and is almost 2 years out from it. One last thing that I am trying to come up with a plan on how to do is give Jax a bath...now that he has his central line, he cannot get it wet, I honestly do not know how to bathe him...maybe someone has an idea theyy would like to share. Thats it from me for tonight, just finished a VERY long dressing change and now I am going to try to get some rest to see what tomorrow brings. Thank-you everyone for following Jax's journey.
http://www.facebook.com/events/259758137459038/
Jackson's bone marrow transplant is scheduled for July 13th, keep the family in your thoughts. Continued prayers will be needed as Jax has a 160 day recovery period
Jackson Baldwin
Please say a prayer for Jax today and always. He is being admitted today and will receive his first chemo treatment tonight. He has several to go through before he can receive his Bone marrow transplant. His life is about to be a bit rougher than it already has been But with his family and extended family here for him, and the Lord by his side he will pull through just fine. God Bless Valik's and Baby Jax, they are and have been an inspiration. Please just add a few extra prayers for them a day.
I know there will be many ups-and-downs, but to my Mr.Smoochie Cheeks:...I promise everything WILL get better. Mommy and Grammy will be right by your side. I Love you and am so darn proud of you!
Update on Baby Jackson Baldwin, He was admitted into to hospital earlier today. He is now resting comfortably with Elmo by his side and his favorite spongebob DVD on the big screen. He has began the first process of Chemotherapy...which is to flush out his entire system. This is done prior to the first Chemotherapy drug to ensure that the Chemo will work properly, and to prepare his kidneys for the next step. Once a complete flush is done, then Jax will receive the first Chemo drug tomorrow morning between 8 and 10 am. That is all I know for now. The nurses have been so very kind to Jax, Grammy (Lynn Carter-Orsell) and I.
On a different note, Please continue to pray for Charlie Knuth, as he is admitted on the same floor as we are and the doctors are deciding whether or not to re-transplant him...Sahar, (Jax's "big sister") has also been admitted as well, on the same floor...she has been running a fever for 3 days with an infection in her Central Line...
I feel for both of these precious butterflies.
I will continue to post any and all updates. Thank-you and god bless.
Well, Jackson had his first day of Chemotherapy this morning, and afternoon. He did better than I had imagined! A little irritable, and got sick a couple of times, but all-in-all...he did surprisingly well. The first Chemo drug took about 1 hour to run through his body, and then the second one took a couple of hours. He is soaking diaper after diaper-which is a GREAT thing!...He is sleey for the most part, but when he awakens, he is pretty unhappy. He seems more lethargic, but still doing great. ...A couple of new things, Jax does have a patch on his neck which looks infected, along with a spot on his ear and underarm-from required monitoring of Jax's temp with an underarm thermometer; so we did a couple of skin cultures to see what antibiotics Jax will need to be on, since he is going through chemo and radiation to kill off his immune system. Jax is on many new medications to help deal with the effects of Chemotherapy. He hs a double IV pole which he is hooked up to 7 different pumps for all different things. ...Again, I know this is an extremely risky treatment for EB, but one that has had amazing results...I can only just try to stay positive for the time being and make Jax as comfortable as possible. That is all the updates that I have for now on Jax.
...As far as Sahar goes, which her mother Asmaa is okay with my posting updates on her...she is still admitted into the hospital. I MISS seeing her, and playing with her everyday...here on the BMT floor, it is not allowed for patients and their families to visit other patients...which hurts, because I would love nothing more than to see little Miss Sahar and give her a big smooch and hug...she currently has an infection in her central line, (which is a port that goes directly to her main artery to her heart) the doctors are making a decision as to whether to replace her central line or not. Asmaa is pretty nervous, but I know Sahar will be just fine.
...Please continue to keep Charlie Knuth in your thoughts and prayers, as he still could use them. I cannot wait to meet thi strong, and incredibly brave little superhero!!
Thnk-you all for reading Jax's updates, and keeping him in your prayers. God bless
Jax is resting well after today's first dose of Chemo. Grammy is sooo ready to be done with all of this already!! My precious little man. ♥ ♥
Update on Jax: This morning grammy and I were woken up at 7 am to a few nurses in the room, telling us that Jax needs a blood transfusion. His hemoglobin levels took a nose dive. The nurses already had the bag of blood hung and waiting for consent. After that, it was time for Jax's Chemo meds. A new required chemo drug was introduced today, and Jax had quite the reaction to it...this is what is going on in the picture that I am posting...Unfortunately there is not much we can to for the side effects other than tylenol and benadryl. Jax will need to be on the same chemo drug for the next 3 days, so this reaction is not going to go away for sometime...Jax is still on antibiotics and is still running a fever, not quite as high as yesterdays but still concerning. There is not too much else to update on..I am just more worried about Jax, his face looks terrible and I cannot see the rest of his body as it is all covered with dressings to tell if that is affected as well...I will continue to update.
Just an update on our boy:
Today has been one of the most toughest days that I have ever in my life experenced. Many emotions have radiated from me. I hate that I can't just make everything better for Jax instantly. I know it takes time, but I miss being able to play with Jax, hear his laugh or even a short little giggle, or a 4-tooth smile. It just seems like forever that Jax has not really been himself. I feel so terrible for having to put Jax through all of this even though I know that he will be much better when everything is all said and done.
I have had to literally fight the tears, and fight a breakdown for Jax's sake. I know he NEEDS his mommy right now, especially right now. I know I sure do need him. It has been such a long day today. Jax slept all day yesterday and woke up at 1:30am and went back to sleep at 6 am. After being awake for that long, Jax went into a deep sleep and was TOO comfortable. His breathing rapidly decreased and he needed more oxygen, and more, and more. The nasal canula worked but was shortly lived, the issue is that I could not get it to stick to his face without taping it there. Nothing was working. Then the respitory therapists kept coming in and out of the room to add more oxygen, or use a higher capacity canula, or to add some moisture into the oxygen. Jax and I were having such a difficult time trying to keep the canula onto his face, everytime we had to put a new one on, he would cry, then scream, then cry, and bat me away, and cry "mamamamama..." while I stood over him trying to make sure the prongs go into his nostrils and two nurses + 1 grammy held Jax's body down all the while trying to be so incredibly gentle with his skin and not to damage it even more. ..The hardest part for me was to hear him screaming and crying for me. He was annoyed, in pain, and just wanted mommy to make it all better. ..Eventually we ended up finding a happy medium. The canula is stuck on his face better and we have had to put "no-nos" on his arms..basically like 2 arm splints to prevent him from grabbling and tugging at his canula. My heart hurts for him to see him like this and to see his pain.
The doctors are trying their hardest to keep Jax out of the Intensive Care Unit to be intubated. I do not believe we have any more options available to Jax as he is still having breathing problems and has even more water retention than just yesterday. Another chest x-ray showed even more fliud on his lungs and so the doctors have Jax on a constand drip of medications to help him release the fluid. I have been told that if Jax keeps retaining more fliud, and accumulating more fliud in his lungs, he may have to go to the PICU. The doctor had a conversation with me about the PICU and what to expect if Jax needed to go. She had explained that Jax will have to be sedated and intubated until he can breathe on his own again while in the PICU.
So, this has been a very trying day for all of us here. I will update with any new information. Please keep your fingers crossed that Jax will not need to be transferred to the PICU. Of course we know that with Chemo, the effects of the medications used finally start to show their presents about 1 week after the meds are started and the side effects can last to about 1 month after the medications are stopped.
Thank-you for reading
Thank you Lord for good news and healing!
Update on baby Jax...
Today we received the best possible news ever!! Jax has made excellent progress with his BMT. A lab test has shown a mega boost in his white blood count this morning, which in theory, has the doctors believing that Jax has engrafted...meaning, his body has accepted the donor's cells!!!!! I feel like I am on cloud 9, I hope to god that this is what is actually going on. The doctors also said that Jax has done extremely well with his Bone Marrow Transplant/Stem Cell transplant, and that he is also doing better than they all expected! I am so incredibly proud on my son! And for the best news yet, the doctors have come up with a date of Discharge for next Tuesday!! ...They did caution that this is a very tentative date and this is if Jax is able to transition from all of his IV medications to Oral, does not spike a fever, or get an infection. I am SO happy!! I attended a more detailed personal meeting with the doctor to discuss more in depth what to expect once Jax is discharged to the Ronald McDonald House, they toldme I have to be extremely weary of Jax's health, he needs to wear a special mask on his face if we go out in public, and even around the RMH. I also have to monitor his breathing and temperature, if he spikes a temperature greater than 100.4 than he will need to be re-admitted. Additionally, Jax will be on even more medications than he was before, and he will need to visit the clinic daily where doctors will closely monitor his health. Grammy will be leaving Friday and going back to New York, and Jax and I will be making the move back to Ronald McDonald House on Tuesday! I would like to Thank everyone again for all of your support and prayers..it means so much to me.
One more thing...Jax is doing so well that he was able to leave his hospital room for the first time in almost 1 month today!! He LOVED it, looking at the lights, and a special run-in with his good friend Sahar and Asmaa.. Jax had his protective mask specially made for him and his skin! The staff here at the hospital are so wonderful!
By: Jessica Valik
First attempt to leave Jax's arm unwrapped....NO GO!! Goshhh, bad idea! He rubbed all the skin off of his elbow, his hand broke out bad with blisters...and he itched in more blisters all over his arm... Well at least I can say that we tried! He was happy to be "free" and was giggling at the fact that he can slap my hand and make a neat noise!! On to dressing change time...
This is just irritating me, and I need some help.
As many of you know, Jax needs many special wound care supplies. These supplies are extremely expensive and is something that Jax's insurance SHOULD cover, however- since Jax normally gets his supplies from a supplier in NY, since he is out of state suddenly the insurance company does not want to cover
and on top of that
I cannot get ANY of Jax's doctors back in NY to sign for the past 2
shipments of supplies that our supplier sent. This means that if I
cannot get a darn signature then I am going to be owing ALOT of money
and I have no idea what to do about Jax's future supplies, and more
importantly the supplies that he is needing now...
With this being said, Jax is running dangerously low on ALL of his supplies and mainly Mepilex lite, 8x20". ...Can someone please help or put me into contact to someone who can help...National Rehab does not work with NYS medicaid so that is not an option. ...Thank-you.
With this being said, Jax is running dangerously low on ALL of his supplies and mainly Mepilex lite, 8x20". ...Can someone please help or put me into contact to someone who can help...National Rehab does not work with NYS medicaid so that is not an option. ...Thank-you.
Jax's 1st birthday is August 20th!! We will be
celebrating his birthday on Tuesday August 21st at the Ronald McDonald
House here in Minnesota at 11 am. All are welcome to join us! Also, the
local news crew will be there to video his birthday, his journey through
his BMT and Jax's personal story. The news crew will also be
interviewing Dr.Tolar himself and the Hous Manager at RMH along with a
few other volunteers! ...I can't believe that Jax will be turning one
already, seems like his first year flew by quick, but I am so thankful
that we will be celebrating it! Happy early Birthday Jackson Baldwin, momma is so proud of you!
For those who are asking for a mailing address to send gifts/cards for Jax's birthday:
Ronald McDonald House
621 Oak Street SE
Minneapolis, Minnesota 55414
C/O Jackson Baldwin
Ronald McDonald House
621 Oak Street SE
Minneapolis, Minnesota 55414
C/O Jackson Baldwin
Have a good day to all x
1 comment:
This is good news I wish all to go well with this sweet little guy... I love all of our EB babes!!! God watch over Jax in this time of need and guide the doctors to help get him better!!! Love you little Jax!!!
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