Ryan's Story in our Local Newspaper Today

Below is a link to a story written about Ryan that ran in our local paper today:

http://www.maplevalleyreporter.com/news/266468381.html

Day +38 Decreasing Platelet Count & GVHD Flare

Last week, Ryan was admitted to the hospital because of breathing problems and a low oxygen saturation. They observed him for 24 hours. The breathing and oxygen saturation didn't change much but the CT scan of his lungs was clear, and they couldn't think of anything else to work him up for, so they released him. We are now back at the RMH apartment.

I am feeling a bit discouraged because Ryan's platelet count has started dropping. I know it is normal for it to fluctuate, but it was up to 155K a few weeks ago, then it hovered between 135K-145K for about two weeks. Then, last Thursday it had dropped to 105k and today it was 79K.

So far, the team says they are not concerned about Ryan’s counts.  However, when I was on the phone with the SCCA nurse last Thursday and I mentioned the count dropped to 105K she said "Yeah, we noticed that too" in a voice that had a hint of concern in it.

I haven’t had a chance to discuss today’s drop to 75K with the team yet, but if it keeps decreasing at this rate, he will need a transfusion in a little over a week. I thought we were done with transfusions!  I am really freaking out a bit and am worried that he might be having graft failure. It makes me feel sick to think about that possibility.

Also, his skin GVHD flared back up this morning, so we have stopped tapering the steroids and are keeping him at the same level for now.

Ryan has really been missing home.  His dad and sister stayed with us this weekend.  It was a surprise to him and it really lifted his spirits.  However, today he was talking about how much he misses his cat, Dexter.  He tried to convince me that we should “stop by the house” (as if it were close).  I had to remind him that we are not allowed to leave the city until summer is over, at the earliest.

Day +22 Exciting Day! Ryan got to breathe fresh air for the first time in a month.

Ryan's platelet count was 6 digits for the first time today  (114,000) and his ANC has climbed into the normal range for his age (2684).

The transplant team decided to slowly start weaning him off steroids. Also, there was talk about a possible discharge mid-next week. And... We unexpectedly received a 4-hour pass out of the hospital today!!!

The funny part is that we didn't know what to do at first. We have to avoid the general public, but we don't get access to our apartment until Monday. We ended up going with Grandma Terry and Grandma N to a nearby park. We had to take several precautions - Ryan had to be covered in sunscreen head to toe, he had to wear a hat, and he also had to wear a mask as he was wheeled through the hospital to avoid germs from anyone sick we might pass in the hallways. We took Purell, anti-bacterial hand wipes, and Clorox wipes. Most importantly, we had to make sure there was significant distance between Ryan and anyone else at the park (especially kids). It actually worked out.

My favorite part of the day was seeing Ryan get excited at the park and start running for a few seconds here and there. It is hard to believe that only five days ago he couldn't even stand up for more than a few seconds!

I am continually amazed at the miracles I keep witnessing. Every morning, the first thing I do is ask for a copy of Ryan's labs. I feel like a kid on Christmas morning who can't wait to open gifts. Then, I stare in amazement at the numbers I am seeing.

For a year now, the numbers on Ryan's labs always went down. It got to the point where I was really just interested in seeing his numbers so that I would know what type of blood product(s) to expect him to get that day, how long we would be at the clinic getting transfusions, and how careful we had to be that week to avoid hemorrhage and infection.

Ryan has had over 50 blood/platelet transfusions, each taking several hours. Today, it finally sank in that he may never need another one!

Day +19 & Day +20 Increasing counts & Imaginary Parasites

As far as pain goes, each day has been incrementally better for Ryan.  He hasn't had any Morphine or Oxycodone since yesterday morning and today he walked a little bit.  It was even his idea; he didn't have to be bribed or coaxed into it.

In addition, today was the first day that all three types of blood cells showed increases on his labs. Today's counts:

Platelets: 65,000

Hematocrit: 30.2

ANC: 1665

With his ANC being over 500 for several consecutive days, his ability to take pills, and the fact that he is able to eat and drink some, he would have met the criteria for hospital discharge this week, IF he didn't have acute GVHD. With the GVHD we are not going anywhere just yet. The steroids will continue for the next 9 days and then, if they think the GVHD is under control, they will start to wean him off. If it does not get under control, I have no idea how long we will be here. At a minimum, I think we probably have two more weeks inpatient.

However, I have been asked to get our housing arrangements in order because, at some point soon, they will probably start giving us "passes" for a few hours out of the hospital and we will need to have a non-public (germ and virus free) place to go.

Being that we do not live within 15-30 minutes of the hospital (I wish), we need to stay in Seattle. Luckily, some transplant apartments that are run by the Ronald McDonald House opened up and I was able to go select one. I am not sure why, but I was picturing in my mind that they would be kind of run down, outdated and smell bad.  I was surprised that it is actually a fairly new building (11 years old). Also, in the last few weeks, they have been in the process of updating the open units, so I was able to pick out a 2-bedroom with new flooring, paint, and all new furniture donated by Lazy Boy. I will be moving some of our stuff over there next week, which should also make our room at the hospital feel a little less crowded. And, my car will no longer look like a homeless person is living in it. It currently has folded clothes for both of us stacked along the back seat, and I have been keeping stuff like cases of bottled water, extra toys, even a small trampoline of Ryan's in the back. I go out to the parking lot occasionally and grab whatever we need.

With the discontinuation of the pain meds, I had hoped that some of Ryan's itching would stop. Not so. In fact, he is still taking regular doses of both oral and IV anti-itch meds.  He doesn't know it, but I am also putting Aveeno anti-itch lotion on him. When we first arrived, the hospital initially gave us Eucerine lotion. Ryan let me put it on him once, but he didn't like that it made his skin feel greasy. With the skin GVHD, the doctors recommend lotion so that it is not aggravated by dry skin. Ryan absolutely refused to even let me put the Aveeno lotion on a small test area, so I had to resort to tricking him. The hospital gives us little travel size bottles of Johnson & Johnson baby wash. I emptied one of them out and filled it with the Lotion. He sits on the shower seat while we first wash him with the baby wash. By then, he is so busy shivering and complaining about being cold, that I can quickly put the lotion on as if it were body wash.  I think he might be starting to catch on, because today he noticed that I didn't rinse it off and was complaining that he felt slimy.

Unfortunately, the anti-itch meds seem to be losing their effectiveness.  That, coupled with a serious bout of "roid rage" after tonight's steroids were administered, made for a pretty unpleasant evening. Ryan's behavior toward the nurses and CNA's was horrible. He wouldn't cooperate when they were trying to take vitals and he was making really rude comments.  It is so embarrassing when he gets that way. I feel like the worst parent ever with my out of control child.  However, the nurses keep telling me that they see it all the time with kids on steroids.  I haven't worked up the nerve yet to say "yeah, but isn't my kid the worst you have seen?.." I'm not sure I want to know the answer.

He had a really bad itching episode tonight and was really upset that he couldn't have anymore anti-itch meds because it was too soon after the last dose. He was rolling around in bed and screamed "I am so itchy! This room is full of parasites!!!" Thankfully, his Benedryl and Zofran kicked in shortly after that and made him tired enough to fall asleep.

Day +18 A Little Better

Today was a little better than yesterday, but still a challenge. The Attending Physician this morning said that Ryan’s pain could be due to the steroids.  However, he must have the steroids for the GVHD.  The earlier you intervene with steroids, the better the outcome, and less chance that the GVHD will get worse or become a long term issue (chronic GVHD).  The good news is that if Ryan responds well, they could start tapering him off the steroids as early as next week.  In the meantime, it is a constant battle to try to get ahead of the pain and itching with Morphine, Oxycodone, and anti-itch drugs. It is quite the exercise in prediction and timing to keep him comfortable.

Another piece of good news is that Ryan’s ANC doubled again overnight and is now at 1288.  It is pretty impressive to see it go from zero to 1288 in only four days.  In addition, he has made a few platelets on his own as well, and his count has increased from 23,000 to 30,000 in the last few days.  His red cell count has decreased a little bit, but it is normal to have the white blood cells recover first and to have red cells and platelets lag behind.  I am pretty happy to see any movement with the platelet count this early and I am not yet concerned with the drop in the red count.

The “Art Cart” came around today and I picked out a wooden train kit with paints for Ryan.  I figured I would stash it away until he was feeling better (i.e., in his right mind), but to my surprise, when he saw it he said “I want to put that together now.”  With the steroids, I really didn’t think he would have the patience.  I was sure that there would be all sorts of issues with the project that would send him into a rage.

However, he agreed to get out of bed and sit with me on a mat on the floor to put it together.  There was no rage, but I did get scolded several times for not holding the paint right and not sitting the right way.  Apparently, he wanted my legs curled in a different direction for some reason.  I tried to accommodate his crazy request to avoid conflict, but one of my legs eventually fell asleep.  We did make it through most of the train project.  We are just a few wheels and some paint short of having it complete.  Maybe tomorrow…

Something finally made Ryan smile later in the day.  There is a guy that comes through the halls every few days standing on a floor cleaning machine (looks like a cross between a Segway and a Zamboni with a scrubber underneath it). He noticed that Ryan was watching him through the glass doors of our room so he drove over in front of us and did several “donuts” in front of us while waving to Ryan.  Ryan even did a courtesy wave back.

Day +17 Today was Really Tough

Ryan's rash is slightly better in appearance and his ANC was over 600 today! The bad part is that he is still itching like crazy at times - to the point where he thrashes around in bed screaming and crying "Itchy!" "Itchy!!!" At one point, I was trying to explain to him why he couldn't yet have another dose of IV anti-itch medicine and he looked me in the eyes with a miserable look and screamed "Why aren't you doing anything to help me?!?"

In addition, the pain behind his knees has gotten worse and now he also has the same type of pain inside his elbows. He could only stand for a few seconds today before he would start screaming and crying in pain. "Pain!" "Painful!" "My legs are killing me!!!!" Even sitting on the toilet and on the shower seat today was really painful for him.

To add insult to injury, the behavioral side effects of the steroids kicked in too. High dose steroids affect kids MUCH differently than adults. Ryan turns into a completely different kid. He basically was angry and verbally abusive to me all day and would have episodes of pure rage. Nothing I did was right or what he wanted, even when I had done EXACTLY what he just asked me to do. He even screamed at me "YOU SHOULD BE ABLE TO READ MY MIND!!!" (and he meant it.)

I can't blame him for being angry and lashing out, and the psycho behavior is the steroids talking. However, it is draining both physically and mentally for me. I was in tears by this evening. It is extremely upsetting to see him so uncomfortable and in pain (and blaming it all on me).

All day, no matter what I tried to do to help him, it just didn't, and his steroids told me how inadequate of a job I was doing. I finally agreed to let the nurse give him IV morphine because the Oxycodone wasn't doing much for his pain.

I started wondering things like "What if he can't walk right ever again?" and "What if he is in chronic pain for the rest of his life?" He even made a comment along the lines of "It's because of that man's cells inside me. We should put my cells back!"

I started to get caught up in the "what if's" but I quickly reminded myself of the advise I have received from other transplant parents to not look too far ahead and only take things a few hours at a time.

My day ended with the night shift nurse basically telling me that they can't be spending as much time helping with Ryan tonight because there are kids on this floor sicker than him.

We have had so many great nurses here, but there are a few we have run across that really need to work on their people skills!

Day +16 Trying to Dodge Bullets

Another transplant mom recently used the following analogy while providing an update on her daughter's recovery after a second bone marrow transplant:

"I picture each BMT patient running down a battlefield dodging bullets the whole way. The bullets are liver failure, kidney failure, lung failure, heart damage, infection, bleeding, graft vs host, viruses, etc etc.  Some dodge every one, some get hit by many bullets but make it out the other side, and some get hit by just one and are not so lucky." - Connie Lee*

We had good news yesterday morning with the first signs that Ryan's new bone marrow is starting to engraft. This morning's neutrophil count was also impressive - it had more than doubled overnight.

With these first counts came an extremely itchy rash, fever, nausea, and pain in Ryan's legs, arms, and abdomen. All of those symptoms got worse last night, and by this morning, Ryan couldn't stand up for more than a few seconds due to the pain in his legs. This evening, the transplant team decided to start high dose steroids to combat Acute Graft Verses Host Disease (aGVHD).

GVHD results from an immune reaction after a bone marrow transplant. Immune cells in the bone marrow from the donor (the graft) recognize body tissues in the patient or host as “foreign.” Ryan is the foreign "host".

The resulting immune response is similar to the reaction against an infection. Most transplant patients have some GVHD at some point. GVHD can vary in severity, and different parts of the body can be affected. In severe cases, uncontrolled GVHD can be fatal.

There are two types of GVHD - acute (aGVHD) and chronic (cGVHD). Acute and chronic GVHD are caused by different mechanisms within the immune system and respond differently to treatment.

Acute GVHD usually begins during the first 100 days after a transplant, although it can begin later.  It affects the skin, stomach, intestines and liver.

Chronic GVHD usually begins more than 100 days after a transplant. It can affect the same organs that are affected by acute GVHD and also can affect connective tissue in the skin and joints, the mouth, esophagus and lungs, the glands that make saliva, and the glands that make tears (and for women, the vagina).

Here is my simplified explanation of where we are at:

Ryan's donor marrow graft is starting to come in strong and is pumping out cells that realize they are in a foreign host (Ryan), so they are attacking him. The steroids he started tonight should tell the new immune cells to calm the hell down, which will buy some time for them to get used to their new environment and realize the new host is actually a pretty nice guy and not an enemy.

We are hoping and praying that this is only a temporary, acute, GVHD and not a precursor of more permanent things to come.

*Thanks Connie and Kya Lee for sharing Kya's story in such a public manner to help spread awareness of Aplastic Anemia and Bone Marrow Transplantation.