No, this basket of Meds does not belong to an elderly man… it belongs to a 4-year old

We were in the hospital 9 days and have now been home 6. The first 4 days were rough. Ryan had several days he couldn't eat, drink or take meds. Puking, stomach pain, crying, sleeping in between. Then, Sunday he started peeing straight blood. By Monday he needed platelets, red cells and his kidneys checked twice, then he threw up in the car in the way home and put himself to bed as soon as we got home. Yesterday and today have been better.

In other news, I went back to work yesterday and my brain is too full. Today, half way through Ryan's Dr. appointment I realized my shirt was on inside out. To top it off, I realized when I got home that I was wearing a black bra with a white shirt. And you know what....? I don't care.

A huge THANK YOU to everyone who has sent thoughts and prayers our way and have done other things to help us cope and get through this. You know who you are and you are amazing! Thank you so much!

A Little Bit of Freedom

Day #8 and we got to leave the room! (With a mask and handfuls of Purell to fight off any bad guys in the hallway.) Three laps around the pediatric wing in a toy car and a visit to the fish tank went a long way to lift spirits : ) 

Surgery is over!

Surgery went longer than expected. He lost a little blood and the cath line to the port pulled back a little after surgery, but not enough to risk taking him back in right now. He looks grumpy in this picture because he is hungry and hasn't been cleared to eat yet.

Ryan's Port Installation

Nervously waiting while Ryan has surgery to place a port in his chest wall to allow easier access for treatments and blood draws. It took two platelet transfusions overnight to get his numbers high enough to do the surgery (bleeding risk).

This is an example of what a port looks like:

Musical Volunteers

Ryan being entertained by some hospital volunteers (much to his embarrassment.) I still think he enjoyed the music, even while hiding under his blanket. 

The Hallway of Tears

There is a long, often empty, hallway at the Children’s Hospital, between the patient room elevators and the cafeteria.  I think halfway down that hallway gives parents just enough distance from their child’s hospital room, for reality and tears to kick in.

I haven’t gotten upset in front of Ryan, and I think I have been holding things together pretty well, but I have my moments.  I was walking down that hallway late the other night and I just burst into tears.  This morning, I was walking down that same hallway and saw another mother in tears.  I think that stretch of the hospital must see a lot of tears.

A Prayer for Ryan

The following prayer was sent to me, by a friend, for Ryan.  If you believe in prayer, please pray this or similar prayers for Ryan:

Lord, because You have instructed us in Your Word that we are to pray for one another so that we may be healed, I pray for the healing and wholeness of Ryan.  I pray that sickness and infirmity will have no place or power in his life.

I pray for protection against any disease coming into his body.  Your Word says “He sent His word and healed them, and delivered them from their destructions” (Psalm 107:20)

Wherever there is disease, illness, or infirmity in his body, I pray that You, Lord, would touch him with Your healing power and restore him to total health.

A night away

My mom came to the hospital to spend the night with Ryan.  She insisted that I needed to go home and get some rest, but I think she also needed some time with Ryan.  I finally agreed, but when I got home, it just made me sad.

Brad had done a lot to help around the house, so everything was neat and tidy, but the house seemed so empty without Ryan running around.  I passed by his room and it was quiet and empty.  When I glanced out the window, his sandbox, which he loves to spend most of his free time in, was empty.  It hurt my heart.

Brad and I went to the store to get a few things and I was exhausted more than I knew.  I went up to the deli counter to try and order “a half pound of cracked pepper turkey” and instead my brain merged the words together and I ordered “a half pound of crap… I mean cracked pepper turkey”.  Then, the woman behind the counter went away to slice it and I burst into hysterical laughter and couldn't stop.  It is funny sometimes how and when stress manifests itself.  I must have needed a good laugh.

There are no good options

Between my online research and discussions with Ryan’s doctor, here is what I have learned so far:

The only cure is a fully matched bone marrow transplant from a sibling.  Ryan does not have a fully matched sibling. His sister is a half sister, so it is highly unlikely she would be a match.

A non-fully matched bone marrow transplant (most likely from an unrelated donor) is not recommended unless immunosuppressive therapy does not work.  This is because the success rate for this type of transplant is only around 50% and there is a 60-80% chance of Graft-Versus-Host Disease (GVHD). GVHD is condition where the new transplanted cells regard the recipient's body as a foreign.  When this happens, the newly transplanted cells attack the recipient's body.

The ATG treatment Ryan is receiving is not a cure, but it has the potential to put him into a partial or full remission.  The doctor feels there is about a 75% chance it will put Ryan into remission.  However, from what I have read online, there is about a 69% chance of remission and the vast majority of patients only seem to be able to achieve a partial remission.  I found one study that indicated that only about 20% achieve a full remission.

The ATG treatment has a 15% chance of giving Ryan leukemia or myelodysplastic syndrome (MDS), a blood disorder that can turn into Leukemia.  MDS is what Robin Roberts of Good Morning America was diagnosed with and received a bone marrow transplant to treat.

The combination of medications Ryan will be taking once he gets out of the hospital (Cyclosporine and Prednisone) also have nasty side effects, including a warning on the Cyclosporine that a “common” side effect is kidney damage.  There are also some rare side effects that include scary things like “Any disorder of the brain”, "Progressive Disease in the White Matter of the Brain", "Brain-capillary Leak Syndrome", and if the 15% chance of leukemia from the ATG treatment isn't enough, a rare side effect of Cyclosprorine is "Malignant Lymphoma"

I feel like I am voluntarily poisoning my sweet 4-year old boy.  However, I know that if he isn't given these treatments, he will likely die. There are no good options.  We just have to try to make the best choices we can.

“You’d better pray for leukemia” What???

I have discovered the Aplastic Anemia & MDS International Foundation Website:

http://www.aamds.org/

On the website, there is a story about a boy who received the same treatment that Ryan started last night.  The opening of the story made my heart sink, but overall, it is a positive story.  The treatment put the boy into remission over 10 years ago and he remains in remission.

Excerpt: Barbara Manley found herself living every parent’s nightmare the night her two-year-old son, David, was admitted to the hospital for increasingly serious bruising. “The doctor said it’s either aplastic anemia or leukemia, and you’d better pray for leukemia. I knew leukemia was bad, so that was horrifying.”

Link to full Story:

http://www.aamds.org/node/1250

Hello? Is anyone out there? – The lonely world of Aplastic Anemia

The Benedryl given to Ryan prior to his ATG treatment knocked him out within 10 minutes, which has left me sitting in this quiet room with my laptop, searching for as much information as I can find on Aplastic Anemia.  I have found some, but overall, there just isn't a vast amount of information out there, and what I can find is mostly redundant.

I was hoping to find tons of stories about people that have beat this, but I have only been able to find a few blogs written by AA patients or their parents.  What I have read from them has given me a good idea of the roller coaster ride we are likely to experience in the days and years to come.

Tonight, I feel like we are so alone.  All of the kids we have met so far at the hemotology/oncology clinic have Leukemia.  The posters on the wall are all for leukemia organizations, sickle cell summer camp, leukemia/lymphoma society, Gilda’s Club, etc.  Not a single aplastic anemia related item in the office.

I wish there were more Aplastic Anemia patient stories online.  Are there stories of successful long-term remission with ATG?  Hello, is anyone out there?

What a way to celebrate 4th of July… the start of Ryan’s ATG chemo treatment

It is late on the 4^th of July and Ryan was really upset earlier that he couldn't be at home watching fireworks.  He was able to see a few small bursts out the window, but unfortunately, with his neutrophil count being so low, he is confined to his hospital room to avoid infection, so we couldn't go down the hall for a better view.

Tonight is the first of four nights of his antithymocyte globulin (ATG) chemo treatment.  ATG is made from horse serum and is intended to severely suppress the immune system so that his T Cells quit attacking the blood cells that his bone marrow tries to make.  There will likely be side effects similar to  the chemo treatment patients receive for cancer (nausea, vomiting, fatigue, etc.)

Prior to starting the treatment, they gave Ryan IV steroids and Benedryl to help prevent an allergic reaction.  There is a risk that he could go into anaphylaxis, so the nurse stayed in the room for about a half hour to monitor him as the treatment started.  Here is some information regarding immunosuppressive therapy to treat Aplastic Anemia that I found on the American Cancer Society Website:

http://www.cancer.org/cancer/aplasticanemia/detailedguide/aplastic-anemia-treating-immunosuppressive-therapy

The Official Diagnosis: Very Severe Aplastic Anemia



Over the past week, Ryan has had about a dozen blood draws, a bone marrow biopsy, a red cell blood transfusion and three platelet transfusions. We were out of the hospital for a few days, but at today’s blood draw, his platelet count was down to 4,000 (should be around 250,000) so they have re-admitted us.

The doctors seem confident that they have ruled out Leukemia. I was so relieved at this until I started researching what the current diagnosis seems to be – Aplastic Anemia. It sounds somewhat harmless. I guess I was thinking it is similar to Iron deficient anemia and would be an easy fix… until I started researching it further… It is rare and is just as serious as cancer. In fact, the five year survival rate is lower than some forms of Leukemia. The first sentence on the Children's Hospital website for this disease reads "Aplastic anemia is serious. Children with this disease need treatment quickly to survive."

It's really hard to believe we are dealing with something so serious.

The plan right now is that we will be in the hospital the next 4-6 days where Ryan will receive some nasty chemo-like immunosuppressant medication that will wipe out his immune system. This may help prevent his immune system from destroying the cells his bone marrow is trying to make. Unfortunately, he will need regular platelet transfusions for quite some time, and we will not know for months whether the treatment is working. In the meantime, they will be putting him on the bone marrow transplant registry, as that is one of the only other treatment options available.