Christmas 2012

This year we stayed home for Christmas instead of traveling to PA. It was nice, but I missed riding the quads in the snow with the dogs. That would have been fun. I got some pretty cool stuff and even some gifts wrapped in Bone Collector wrapping paper... It was relaxing to have Christmas day at our house and not have to travel. Everything went pretty smoothly. The ladies did their thing in the kitchen and Amanda successfully had dinner ready at exactly 5:30. Dinner was delicious and dessert was amazing! We had some friends and neighbors stop by. It was great watching the niece and nephew and neighbors kids open their gifts. We just want to thank everyone for coming here and making Christmas at our house possible this year.

December 2012

Things started out slow, but got pretty busy after Novermber. In the beginning of December I was starting to feel a little better with the help of the Humira. The doctors decided to go ahead and lower my prednisone again. So I was moved down to 7mg. Then as long as things were going okay I could lower .5mg every two weeks and return to the doctors in the middle of January when I reach 5mg to discuss the next step. I can't wait to be off this stuff!Rehab medicine said the strength is increasing in my foot that had barely any movement when I left the hospital. Still can't lift up my big toe though. Christmas is only a few days away. Hope everyone gets what they want.

Holiday's with the Fischel's

As many of you know- but for those who don't-- Our recent publication in the Philadelphia Inquire has led us to connect with the Fischel Family from Moorestown, NJ. (See publication here)

Sean is an amazingly strong 7 year old who is battling HLH and so much more than most do in a lifetime in the past few months and those to come. As we go through this Holiday season we ask you to continue to keep Sean, his parents, siblings, family and friends in your prayers. If this is the first time you are reading about Sean's journey, please read our first blog entry here.

Over the holidays we will update you on Sean's progress below. Please feel free to leave words of encouragement for his family below.

--Amanda & Eric

December 2,2012
Sean is going into a hyperbaric chamber tomorrow to help him prepare for his surgery on Friday. This unconventional treatment is supposed to infuse his body with 100% oxygen which helps in the healing process and fighting infection. I will update you with surgery info once family has been informed. Prayerfully in God's Hands.

December 6,2012
My dear friends, we are taking a big step tomorrow on Sean's road to recovery. He is undergoing bilateral below the knee amputations as well of amputations of all of his finger tips (except his left ring finger!). He sustained this damage due to being in septic shock for so long with very poor circulation. We are sooo truly blessed and thankful that Sean is alive and that he is mentally intact. Our Sean can do this!! He is so laid back, adaptable and happy. Please pray for the surgery to go well and for Sean's spirits to remain high.

All my love!-Kim(Sean's Mom)

December 7 (Post Surgery)
Sean is out of surgery. It was about 6 hours total. All the procedures went well with few complications. He was extubated in his room and spoke a few words. He was given more pain med rescues and is now sleeping. The reality of it all is becoming more concrete. We have a long journey ahead of us. Thank you so much for all your notes and messages of encouragement and faith. I can't tell you how much they mean to me. The Lord is my strength.-Kim(Sean's Mom)

December 21
Sean is our Christmas miracle! He got his wish this afternoon...he has been cleared to drink and eat soft foods! His first request was sushi!! He can't eat that yet but his next desire was mashed potatoes and icy cold water!!

Although we may not have all our festive trimmings around us, we have the true Christmas Spirit within us. We are so blessed!! Merry Christmas to all our amazing and supportive friends!

January 1, 2013

Update: It seems we have hit a plateau. Sean continues to fight the fungal infection in his lungs while we pray the HLH is in remission. His breathing settings have not been weaned in weeks and his chest tube is still producing fluid. He continues to present with intermittent fevers, tachycardia, and vomiting. We are entering our fourth month in the intensive care unit. The weeks are long, but the Days are even longer. The duration and severity of Sean's problems are really taking a toll on him emotionally. It is so hard to watch sometimes. Please pray that he has the emotional and physical strength to make it through this tough course ahead. I pray that each and every one of us can count our blessings big and small in this New Year.

Update: January 6 Update: Sean has been declining medically. A full body CT Scan revealed an abscess on his chest wall between his aorta and pulmonary artery. He went to IR to get it drained under a "live X-ray" for precision. His chest tube was also moved into a lower part of his lung for better drainage. Because of this recent development he will most likely need invasive surgical intervention. The extent of this surgery is being discussed by his PICU team, general surgery, and infectious disease. Keep praying please!!

Next Blog on Sean

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HLH Check-up/Thanksgiving

So far my labs look pretty good. My white and red blood cells have normalized into healthy range. I guess good labs make for a boring update. But it is nice not going nuts trying to figure out why they're not normal. I have a follow up with rheumatology in a few weeks. We'll probably be lowering the prednisone again. I can't wait to be off it.

Hope everyone had a nice Thanksgiving. Ours was good. We visited my family and Amanda's. Christmas is at our house this year so were going to the tree farm this weekend. Amanda already has the lights up.

Just wanted to say thanks to everyone for helping share our fellow HLH family members stories. It means a lot to us an them. Keep an eye out for more ways you can help. Amanda will be posting info on volunteering on the website soon.

-Eric

Lung check-up

Today was really long and i'm pretty tired. First I had a CT scan on my chest and abdomen to check my lungs, liver and spleen. Then I had to do a test to see if I breathe ok during and after exercising. 4 hours later I finally had my actual check-up with results.

Overall my lungs are where the doctors expect them to be. The medicines i'm on are limiting the amount of 'good inflammation' that increase healing, so everything will take much longer than it would if i wasn't on them.

The CT scan showed scarring from the spots that started to harden when i was on the ventilator and ECMO. Hopefully they'll continue to heal and soften. It's still hard to breathe big deep breaths sometimes and i get sharp pains too. They were still a little fuzzy in some spots. For those of you just following this is an improvement because i was told when i was on ECMO my lung xray was completely white and its supposed to be black to show air in them not fluid. My breathing test was good. They took my blood and measured the oxygen and co2 and then i exercised and they measured my breathing and heart rate continuously and then they took my blood again. I never needed oxygen help once-so that's good. My spleen is getting smaller, but is still enlarged and my liver is still enlarged. last time labs showed my liver function was okay though so we'll see next week after my labs come back.

The doctor said as long as I continue to do healthy things and don't get sick I shouldn't have to come back for a few months. So I wont have a lung doctor appointment until March of next year.

I also saw some familiar faces and met a new one. Maureen, who's having a baby next month, was one of my ICU nurses that took care of me when I was sleeping (medically sedated). She even donated blood directly to me with the program Amanda set up with the Red Cross when I needed several transfusions a day.It's pretty cool knowing these people worked so hard just to save me.

I'll have some bloodwork done Thursday to test my cell counts and see where I stand with the HLH. I won't have those results until next week. The Humira is helping my arthritis and I feel much less pain and almost normal, but weaker and slower.

New HLH Support Website

We are pleased to annouce the newly published HLH Support website --created by Kelly Marsh, mom of HLH and Bone Marrow Transplant Survivor Hannah Marsh. Kelly started a support group on Facebook a few years ago so families could unite, share their stories and support one another through this trecherous journey. With limited resources available for histio diseases, this website is a one-stop-shop for those privy to the HLH world who are looking to recieve a more intimate inside to what they are about to endure. Where there is Hope and Love - there is strength. --And there is plenty of that to around in this group from stories of loss that still empower others to continue to fight and stories of success, like Hanna's, that give us all the will to continue on this journey. This website will connect you to resources such as the Histiocytosis Association and other non-profits with specific goals in funding a cure to HLH.  It will guide you through the bone marrow transplant process for HLH patients. There you will find a link to the private Facebook group page. We hope you will find comfort in this site. Without Kelly's efforts to organize the support group the world would be a much colder place for HLH patients and their families. I think we can speak for the group when we say her mother's touch has touched us all.

Thank you Kelly! Congratulations!

-Amanda & Eric Majusiak

www.HLHSupport.org 

Sean's Journey with HLH

Our recent publication in the Philadelphia Inquire has led us to connect with the Fischel Family from Moorestown, NJ. (See publication here)

This is Sean's story from his write to unite campaign that supported the Histiocytosis Associations campaign to raise awareness and funds for histio research. Below are some updates on him. Please keep him in your prayers. He is an ECMO warrior just like me! He has developed an infection and is battling that and HLH while on chemo. Please pray!

This September, Sean was a normal, happy, healthy boy beginning his first grade year and celebrating two new front teeth that came in over the summer (just in time for this school photo). A soccer and street hockey player, novice wrestler, and even a student of sailing, Sean tackles everything with a sparkle in his eye and a caring heart. When he developed a high fever, it was monitored by family and doctors; but wasn’t of great concern, nothing out of the ordinary for a child this age. What we didn’t know was that the fever was the beginning of a very frightening journey in which Sean and his family are now living. 

Sean’s rapid decline included multiple organ failure, several cardiac arrests and finally a diagnosis of HLH, an extremely rare disorder of the immune system effecting only 1.2 children per million. Sean is now fighting for his life at CHOP hospital in Philadelphia, one of the few hospitals in the country equipped to treat this disease. His team of doctors and support staff are remarkable and Sean’s family is facing each day with guarded optimism as they watch Sean’s slow progression. The physical and mental anguish is overwhelming; but, every day that Sean is with us is a blessing and sign of hope for the future of this beautiful boy.

We still have a long way to go with understanding this disease. Every new day presents another difficult challenge for Sean; but he is a warrior and is fighting hard as he confronts this disease head-on.

Leave an encouraging note for Sean!

Update 10/27:Please, fb friends and family, keep praying for Sean to recover from this unexpected illness:

4PM marks the time exactly 28 days ago, that we arrived to CHOP via helicopter. I didn't think we'd make it this far and at the same time I didn't think we'd here this long. This journey has been so painful, tumultuous, and unexpected. We have so far to go. Sean is a warrior! He is like David in the face of Goliath. In a world where many give up, he is persevering! He is truly fighting for his life daily! He amazes me everyday!

Sean's body CT scan did not reveal anything new! There were no new areas of infection. His fever has broken today and his vitals look good. This kind of infection however, is very slow and difficult to cure in the setting of being immunosupressed. It has also set back the treatment of HLH as his chemotherapy and steroids have be significantly reduced. There is such a fine balance that changes daily with HLH on one side and Infection on the other. Both are ravaging his body.

Thank you so much for your love, prayers and support.

Update 10/28:Sean had a stable quiet day. He opened his eyes this morning in response to me talking. It's the simple things that make me so happy.

Update 10/29: Seany has a lung thoracoscopy tomorrow to see the extent of the fungal infection and to wash it out. Praying it is not invasive (in his lung tissue) or he is going to need surgery to remove part of his lung! He is running a fever again and has elevated blood pressure and heart rate. Pray again!

Update 10/30: Sean came out of surgery well. Results however were pretty bad. He has invasive fungus in his chest wall, on his entire right lung and on his diaphragm. Not sure how we are going to proceed...we have a meeting soon with Oncology, rheumatology, infectious disease and surgery to discuss the best of the worst options. Again a fungal infection cannot be eradicated unless you have your own immune system...however his own immune system has been causing all this nearly fatal damage.
Update 11/1(From Sean's Mom): "Days in the PICU are filled with so many ups and downs that I feel like a schizophrenic! I find myself watching Sean's monitor (Heart rate, BP, Temp, Venilator etc) like TV. Still love doing all his dressing changes and washing his now bald head.--- Fungal infection is the most imminent threat. Without an immune system it is fatal. His immune system however poses the same threat. Doctors decided to stop suppressing his immune system with chemo. They are also going to trigger it by transfusing donor granulocytes (WBC). Their hope is that it attacks the fungus and not Sean. Love my prayer warriors!"

Update 11/5 from Sean's mom: As I head to bed tonight at the hospital, I wanted to let you know that Sean had a good day!! His white blood cell count is so robust that the transfusions have been halted. He's been fever free for 24 hours. His blood pressure hasn't been fluctuating out of control. His skin is healing really well. And his ventilator settings are being weaned aggressively. The Lord is answering prayers. I can feel it and I believe it. It seems that Sean's fight has a bigger purpose. The Lord is inspiring so many people to come together. Thank you so much and keep praying!

Update 11/7: Big day...Another MRI of his brain to be followed by a spinal tap to deliver his chemotherapy directly into his cerebrospinal fluid. He was extremely agitated this morning but then calmed down and seemed to enjoy his ride to the MRI floor. There is a chance they may extubate (take him off ventilator) tomorrow if his weaning goes well. His fungal infection vs the HLH are in a precarious balance.

Update 11/10 from Sean's mom: Sean was extubated (This means his breathing tube was taken out) on Thursday and spoke his first words in 44 days!! He said "My belly" in response to what hurts?!!

Update 11/15: Sean has gone from "being the sickest kid alive in CHOP" to trying pull a "jail break"! He somehow managed to shimmy out of his bed with his respirator, feeding tube and med lines being pulled out in the process. The nurses and Brian found him on the floor unhurt. He told Brian in his tiny soft voice, "I want to go home, Daddy take me with you." My tiny warrior continues to fight! We have at least two big procedures coming up at the end of the month to fix some of the damage to his body. He will probably be fighting the fungal infection for months (hopefully without surgical intervention). Then we hope we are stable enough to move out of the Intensive Care Unit to the Oncology floor to treat his HLH with Chemo before Christmas. Faith hath no Fear! We continue to see miraculous improvements. Please keep praying!

Holiday's With the Fischels (Sean's Journey Cont.)

Fall Changes

So my sleep study got canceled because of insurance reasons. Hopefully they'll reschedule it sooner than later. I was hoping to get it over with. The Humira seems to be working so i'm crossing my fingers Rheumatology lowers my prednisone tomorrow. This week MTG should be finishing the kitchen floor up. Justin, my dad, and Jode and the neighbor helped put the fire stove back together too this weekend. It sure did warm up the house nice. We started getting things cleared up outside since it's getting colder. The leaves are all yellow and orange and starting to fall. I hope we can keep up with them.

Update: Rheumatology was pleased with how the Humira is helping me and decided to start lowering my prednisone. It was 10 now we're moving down to 7.5! Hopefully it will go well and I can move down to 5 in December.

Fall 2012 Events Update

Together with Rowan engineers and the Geography department at Rowan and our efforts at the Blackwood Pumpkin Festival this past weekend we have raised about $1,000 for Histio research and our fellow HLH family members in need. 

Our table was sponsored in part by the Wickstrum family in memory of HLH Warrior 

Neil Wickstrum,69 who lost his battle with HLH in August 2012.

We can't thank everyone enough for all of their

 support this year!

Over the winter we will be working on event ideas for next year.

If you would like to help volunteer or be a sponsor at future events please email  EricsHLHJourney@GMail.Com  with the Subject 'Event Help 2013'. Please include your name, location, and areas you would like to help with or services you can provide. (ie: design flyers, reach out to sponsors, host your own event, volunteer at our event, donate items/materials, ect.) We will compile a list for our reference and send out an email along with events and services needed to make that day possible.

You can also make donations via www.EricsJourney.org

Thanks for being a part of Eric's Journey to fund the cure for HLH. 

-Eric and Amanda

Hats off to Rowan Engineers!

We can't thank everyone enough for all that they have done. A team of Rowan engineer student presidents were presented with my story and asked if they'd like to help us raise awareness and lend a hand to some repairs at my home to help make it safer for me. They did not hesitate for one moment. Over the last few months they discussed ideas and met weekly for a month before the Histio Kick off event they held on October 5,2012. It included Rowan Physician, Dr. Peggy Hurley, the President of the Histiocytosis Association, Jeff Toughill and myself. That week they also held wristband and food sales in addition to the two Dine for A Cause night at the Landmark Americana in Glassboro. 25% of each check that presented a coupon was donated. This week MTG construction has begun the repairs on our home. We are still in awe over all of this and are amazed and filled with joy and gratitude for all of the hard work that has been put forth by Rowan students & faculty and MTG construction. We are truly blessed.

A special thanks to Dr. Beena Sukumaran and Dr. Chin for coordinating & hosting the histio awareness events. It means a lot to us that we could share this information and help someone in the future by doing so. We are eternally grateful to all Rowan has done for us and the histio community.

Check out the Rowan PR release on this here: www.EricsJourney.org/InTheNews

Love for Lana

Our friend Lana is an adult with HLH just like me. Please share her story and help if you can as she goes through a bone marrow transplant in the upcoming weeks. If you can't help, please pray. Prayers are strong and she will need them.

My name is Lana Leake (Johnson). I am 43 years old. This past May, 2012, I was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH). I was close to dying. I was almost in kidney failure, my liver was elevated, my spleen was enlarged, my heart was out of rythym, I had bilateral pneumonia and my body was full of sepsis. Hemophagocytic lymphohistiocytosis (HLH) is a rare but potentially fatal disease of normal but overactive histiocytes and lymphocytes .Fever, hepatosplenomegaly, pancytopenia, lymphadenopathy, and rash often comprise the initial presentation.. Secondary hemophagocytic lymphohistiocytosis occurs after strong immunologic activation, such as that which can occur with systemic infection, immunodeficiency, or underlying malignancy. HLH is characterized by the overwhelming activation of normal T lymphocytes and macrophages, invariably leading to clinical and hematologic alterations and death in the absence of treatment. The spleen, lymph nodes, bone marrow, liver, skin, and membranes that surround the brain and spinal cord are preferential sites of involvement. Incidence is reported to be 1.2 cases per million persons per year. Familial hemophagocytic lymphohistiocytosis is uniformly fatal if not treated; the median survival time reported in various studies is 2-6 months after diagnosis.

The historical series collected by theInternational Hemophagocytic Lymphohistiocytosis Registry reports a less than 10% probability that the patient survives for 3 years. Even with treatment, only 21-26% can be expected to survive 5 years. Remission is always temporary, as the disease inevitably returns. Bone marrow transplant is the only hope for cure. One study found that 50% of deaths were due to invasive fungal infections, which are probably underdiagnosed. The outcomes of secondary hemophagocytic lymphohistiocytosis vary.

I am to have a bone marrow transplant at WV University Hospital in October or November, as soon as I find a donor. I am still waiting on a match. I have approximately 20 appointments in Morgantown prior to the bone marrow transplant. After the transplant, I am going to have to stay in Morgantown for approximately 4 months. I am asking for donations to help pay for my medical expenses, and lodging in the Rosenbaum House, food and travel expenses. My husband is on disability and I have been off work since May, 2012, and any donation that you can give would be greatly appreciated.

Update: Since this was written, Lana's brother Gene will be her bone marrow donor.
Update: I will be admitted to the WVU Bone Marrow Transplant Unit on Sunday, October 21, 2012, and will have the transplant on November 2, 2012. Please keep me in your prayers.

Update 10/23: I just wanted to let everyone know that my bone marrow transplant has been postponed once again. This is the second time, and I am so bummed out, but I guess that's the way God meant for it to be. My donor was unable to give enough stem cells after 2 days of collecting (10 hours total). I have to go back to the docotor on November 1st and they will let me know what the plan is. Said they may want remobilize my brother and get more cells once he has had time to all them to replenish. Thanks everyone for the thoughts and prayers. Will keep you updated.

Donate

Lana Leake at PO Box 241, Cannelton, WV 25036. 

Some recent photos

Super Vinci

Let today be marked as the day I could shoot a shotgun again. Wore a shooting pad on my shoulder. Did well.

Hope for Hristijan

Hristijan is making small progress. He;s growing and gaining weight, but still needing transfusions and although doctors have discovered he does not have Wiskott Aldrich Syndrome, he does have some type of immunodeficiency and doctors believe he is still in need of a bone marrow transplant. hristijan will turn 1 next week.

Hristijan made it to Germany! It is believed he has Wiskott Aldrich syndrome.
It's very rare and the treatment is same as HLH. Also most of the symptoms are same.
Hristijan's family thanks you for all of your continued support.
"A Bone Marrow Transplant is planned for the middle of January. Please pray that they will find 100% compatible match donor. Hristijan still has chance's", says his father.
Hristijan is also fighting Klebsiella, a very tough bacteria.

BREAKING NEWS: The health department in Macedonia has just granted Hristijan coverage and he will be transported to Grmany for treatment next week! Please continue to pray for safe travels and comfort during the treatments he's about to endure. This will be the first time Hristijan has left the hospital since he was born on January 4, 2012. He is still waiting to transfer as of 11/6/12. If all goes well Hristijan should be transferring to a hospital in Germany for treatment next week.

Hi everyone.
We wanted to take a moment to share a story of a little boy fighting for his life. His father is doing a great job, but has hit some hard obstacles trying to get him treated for HLH. Hristijan will be 9 months old soon and he needs all your prayers to help guide people to him or help him get from Macedonia to Germany where a doctor has agreed to treat him. Please read his story by his dad and share for him. You could save his life. Currently PayPal does not work in Macedonia, but if you know of an organization that can help send funding or send it to the hospital in Germany, please let us know.
--Eric & Amanda

Hristijan's Story 

Told by his dad

On 4th of January i thought i'm luckiest man on earth.I got a son..But then the doctor come and told me my son is ILL he has some infection. I thought ok he is strong like his father.And they took him to intensive care and my world just crash down.Since that day My son and my wife are in the hospital and i never have any day outside of hospital with him.The doctors in our country couldn't find what is wrong with him.




First he was born with sepsis then burkholderia pesudomallaeu bacteria from hospital.After that there was fever, stomach with fluids and alot of diagnosis that were not correct. Pompey disease,CVID,SVID,LCH,FHLH, And now they are telling that he has HLH but unknown triggered. And there is possibility he has NOMAD syndrome.He has vomiting blood and blood was coming out of his rectum.

BUT HE DOES NOT GIVE UP. HE IS ALIVE

He needs 350000 euros(431000USD) WHICH my health insurance will cover only 80% so i need to pay 70000 euro(86200USD).The money that I dont have and we are from a country where most of the people are poor.He needs BONE MARROW transplant to live.Your donation will be for saving another human being.

UPDATE: Hristijan's insurance company has decided to deny his coverage for his to go to Germany to recieve treatment. If you know of an organization that can help him please contact at EricsHLHJourney@GMail.com

UPDATE 10/30: You can find out how to help below or check it out on Hristijan's Facebook group his afther set up. Currently they are working to set up a paypal account, but you can donate directly to his benefit account that has been set up. Treatment has been denied and they cannot travel to another country without assistance or full payment up front. This is their only chance unless an organization can come forward to help them. 

http://www.facebook.com/groups/487807694574177/permalink/487826581238955/

Article featured in his country, Macedonia. Google Translate allowed me to read these in English pretty well. for ease I used google chrome which translated the whole page.

 http://www.donacii.mk/2012/10/30/apel-za-pomosh-na-hristijan-todorovski/

VIDEO: http://www.sitel.com.mk/350000-evra-za-zhivotot-na-devet-mesechniot-hristijan

http://www.kanal5.com.mk/(X(1)S(a0mmshrf3qxdqq55hsmgzojo))/default.aspx?mId=37&egId=13&eventId=98331&AspxAutoDetectCookieSupport=1

Blood Dr and Allergy Test

Doctor appointments from 8 am to 4 pm. Dr Essex said I looked good. Went to allergy test and found out I am allergic to all kinds of stuff. Dogs cats trees goose feathers etc. good thing I don't have symptoms. Second day in a row with the pain at a decent level. With the pain low I can even walk without the brace a little. If this pain keeps getting better old Eric here I come. No more wussy Eric

Wednesday

Humera came last night after midnight. Also trying the tramidol again. I am sick of taking to many oxycodone and tylenol3. I still cannot work my fingers but they don't hurt horribly. The pain is bad but a lot better. I have a lot of joy and excitement that the new treatments might work. I think my cold is going away. Pretty scary. Still having a tough time breathing.

Monday

Had my allergy test today. Have to go back thurs for the next part.

Called Aetna and begged them to main me my new injection that was prescribed last Tuesday. They said they would try and call me back. I'm sick of the unorganized insurance companies. I think they do it on purpose. I have to scour over every bill because they try to charge me for "ops someone put in the wrong code"

I guess I'll start the humera Thursday. This pain is ridiculous. I couldn't even put on my backpack today my shoulders and elbows hurt. Still cant bend most my fingers and my pointers are starting to bend to add to the huge bumps on my thumb.

Also have a freeking cold. I am blowin my nose every minute.

Tomorrow will be a better day

Please vote! Chase Community Giving Grant 2012

Voting is now closed!

Thank you to everyone who participated.

Please help us win a grant for the
Histiocytosis Association.

All you have to do is follow the link and vote!

Please take a moment to share the link with your friends and ask them to do the same.

http://apps.facebook.com/chasecommunitygiving/charity/view/ein/22-2827069?ref=769e98c9eb

Saturday

Well the pain in becoming unbearable. It's had to even sit up in the morning. The birds flying out back in our feeders are beautiful. The leaves starting to change are cool. Fingers don't bend. Starting to get more calcium deposits I think, little nubs sticking out the side of my fingers like an old person. Life sucks and is great at the same time. God is cruel and great. And we all have a little nice and mean in us so try to be a little extra nice.

Lung dr appt

Went well. I have to come back to get some tests done to make sure the amount of air/gases going in are going out correctly. They also want me to have a sleep test. He said overall my Lungs sounded fine, but they're ordering a ct scan on my chest to make sure everything looks clear and they have something to compare to when my lungs were really bad. Got to see a bunch of my doctors nurses and therapy people. Most I remembered some were blurry. It was great to see how happy they were to see me and thank them for their hard work.

No change in pain and I started noticing deformities in my fingers from the arthritis. Hopefully I can start the new injection tomorrow.

Married 1 year

Celebrated our 1 year anniversary this weekend. It was nice. Couldn't do too much. A lot of the pain was around.

Went to rheumatology today. Got 2 cortazone shots in the hands. They switched me from anakinra to humira and gave me tramadol. They also upped my dose prednisone. Hopefully something works.

Hello from Wednesday

Just getting home from work. It's been a tough few days with pain in my shoulders elbows wrists and hands. Good day at work and got set up with some work for the rest of the week.

Trying to get a cut on my leg to heal. It's not going well gonna try some different gauze tonight.

Fingers are pretty swollen and won't close.

September is Histiocytosis Awareness Month!

It has been 7 months since I was diagnosed with HLH - Hemophagocytic Lymphohistiocytosis. I have been through harsh treatments of chemotherapy, steroids, vitamins, shots, and more medications than you can count on your hands and feet! I'm still haunted by grueling pains and discomfort from this horrible disease. 

I hope to increase awareness throughout the month and announce upcoming events and goals. I'm working on my bucket list too.Please share the Histiocytosis Assocation's website also to help raise awareness. Together we can save lives!

Share the Histiocysosis Association Page 

  

No News is Good News ?

I haven't had any doctors appointments in the last few weeks. It was nice while it lasted, but they start again this week and next week. I will be seeing an Ear Nose and Throat doctor for a check up on everything because of the feeding tube and what not from when I was in the hospital. If everything is okay-i'll be scheduling an allergy test to make sure I haven't developed any allergies since they 'reset' my immune system as I like to say :) 

I'll also have follow-ups with Rheumatology to hopefully get off this MTX and try a new shot or something. I still have a lot of joint pain everyday and all day. 

My physical therapy has ended and they've taught things I can do at our local gym and at home to continue to build strength. The gym has a saltwater pool indoors. Its the closest to normal I've felt since I got sick. 

I'll get to see the lung doctors next week also - probably with a follow up CT scan to check on my lungs.

Upping the dosage

So this week I had appointments for rheumatology and hematology. Rheumatology is managing the severe arthritis I have (started when I got sick at the end of January). They decided to increase my MTX to 20mg and test its effect for the next month. If not, we may be trying some new injections. Apparently I have a 'stubborn' arthritis. Hematology was very pleased with my numbers and my ferritin continues to drop. Waiting for labs to come back to see what everything is this month.

Bella's sick too!?!?

So this weekend Bella began acting kind of sluggish. She is our 6 1/2 year old Chocolate Lab-American Bulldog mix. I found a weird bump on her right shoulder and some scabby stuff in her fur. The next day she was rubbing against the wall and I realized she had broke open the bump. Fearing it was some sort of tumor I rushed her to the vet the next afternoon. It turns out it was a cyst and it had ruptured!! Not to mention since she was rolling around outside in this lovely weather, it got infected! The vet said she would take some pulls for a few weeks and it should subside hopefully. No more surgeries in 2012 in our family - I'm on strike!

-Amanda

first haircut

First haircut since January. Looking almost like the old me. Wish someone would have told me they sewed tubed to the side of my head though the scars were a surprise. But cool

No more wheelchair

The wheelchair has been put away for 5 days. Crutches and cane only

    Me and Bella.

Last chemo ?

Praying that this will be my last chemotherapy. 

In a few weeks we will try cutting down on the steroids. 

Walking is going great. Hopefully going to graduate to a cane soon. 

Stills disease? is acting up. Some bad swelling in my shoulders, elbows, wrists, and fingers. Had some cortisone shots but they only worked for a day. Hopefully they can find and treat this.

Grocery Shopping

Out grocery shopping with the wife today. felt good to get out and see people. 

Pizza. Mt dew and steak. Can't get much better than that. 

Getting a little stronger

Getting a little stronger everyday. Getting up and down the

 steps is a little easier and the couch is a little easier. 

Went to the supermarket again. I keep knocking stuff over 

with their little buggies

Chemo #10

Getting chemo #10. Afterwords we are going to try to stop at qdoba. Or the new chipola in deptford. Can't wait. About 45 minutes left.

First Chemo as an outpatient

First Chemo as an outpatient. 

The TVs were kind cool. It took about an hour to come through the IV. Also got labs drawn today. Hopefully my numbers keep getting better.

Being home is great

Being home is great. Very relaxing and a lot of work. It's great to have new deck boards and hand rails and a ramp to help get around. It's also great to have fixed water pipes. Thanks to everyone who has helped out these past few months. A special thanks to Steve and the guys from his church who helped build me a ramp.

Checking out!

I finally get to go home! I can't wait to see my dogs, my house, and the outdoors. 

Thank you Temple Hospital.

New kicks

My new kicks. I'll be going home real soon!

Escape!

I tried to escape today, but they caught me...

Just kidding! We wanted to see how hard it would be for me to get in and out of the truck. it worked out it was just the right height!

Crutches

Chemo has been rough this weekend. A lot of pain and almost no sleep. But we still plan on coming home Friday. Miss you all can't wait to see everyone.Used crutches today. Went real well. Sit to stand without a walker as well. Doing truck transfers tomorrow. Hopefully I won't get sick again tonight. Can't wait for friday

A visit from Meghan

Worked out this morning getting a little better at standing. Amanda can help me out of the really low chair. Enjoyed my visit with Meghan and Tim today. See you all soon I'll be home in no time.

 

 All the doctors come during the week so it gets pretty quiet. Meghan brought me food. Pitz is the best pizza! and weekenders chips. Thanks Meghan and Tim!

Pitz and weekenders

Pitz. Weekenders. And Kenny We are in trouble

 

go home date

Got the tentative date of may 11. That will make it 99 days in the hospital. Met the goal of now hitting 100. Did some major leg strength work today. Should be getting my brace Monday. Next Friday will be here before we know it. Will still have to get outpatient chemotherapy for a few more weeks but ILL BE HOME.
Love y'all 

Foot Brace

Was fitted for my ankle brace today. Did the steps again and walked over 600 ft. Chemo tomorrow then more progress. See u all soon home