Daily blog

Feeling thankful

Sun, 29 Nov 2009 14:37:34 -0500

We breathed a sigh of relief after a talk with Golden’s dermatologist and our lead oncologist. They are both under the impression that the JXG will not need treatment and will not amount to much. PHEW!
Just to be sure, we scheduled an appointment with the leading Histio specialist in the country, Dr. McClain of Texas Children’s Hospital. We will go to see him on Dec 11th.

The biopsy wound on Golden’s back has healed very well. However, the rash on his face persists. It does not seem to bother him and looks nothing like the papule that was on his back.
We have a follow up appointment with his dermatologist to further discuss the JXG and this pesky rash on his face. We’re thinking that he will give us some steroid cream for the rash since it hasn’t gone away with antibacterial cream. Of course we are hoping that is it not LCH, but that is always a possibility. We will have to wait and see what the dermatologist thinks. Hopefully he won’t want to do another biopsy.
The last few weeks have been filled with good times. Grandma Nahomi and Grandpa Henry are here and Golden is having such a good time with them. He wakes up every morning and says,“ Grandpa?” This has become his universal word for both grandma and grandpa. He squeals with delight every day that he gets to see them. It’s precious and also makes me think even more about moving back to CA one day so that he can see his extended family more often.
We shared a wonderful Thanksgiving with grandma and grandpa and spent a good bit of time talking about what we are all thankful for. Golden told us he was thankful for....TRAINS!
We are thankful for all of you who take the time to check in on our amazing little G. Thank you!

Biopsy results

Tue, 17 Nov 2009 13:22:28 -0500

The biopsy results are negative for LCH, but positive for another histiocytosis disorder called Juvenile Xanthogranuloma.
Dr. Dunkel said this was good new even though he is not familiar with JXG.
We will be learning all we can about JXG in the next few days and making all the appropriate appointments to determine what, if any, treatment Golden will need.
We are also planning a trip to see the leading histio doctor in the US, Dr.McClain in Texas.
Thanks for checking in on our little man.

Under Our Skin

Fri, 13 Nov 2009 13:00:21 -0500

Yesterday was not our best day.

It all started about 6 weeks ago.
Golden got his flu vaccine.
2 weeks later he got a rash around his mouth. We didn’t think much of it. Kids get rashes around their mouthes sometimes. I’ve seen a very similar rash on all of my sisters kids. Golden’s doctors were not concerned by it either.
2 weeks after that, a small papule appeared on Golden’s back. This did concern us. To Bryan and I it looked alarmingly similar to the first LCH lesions we saw on Golden’s skin when he was just 4 months old. Our oncologists sent us to see the dermatologist to get his opinion.

Yesterday we took Golden to the dermatologist at 8:45am. He has a cold and an eye infection and was not at all happy about being woken up to leave the house. Much to our dismay the dermatologist took one look at Golden’s rash on his face and the papule on his back and said that he was 90% sure that his LCH was active again in his skin. Bryan and I wanted a 100% confirmation so we asked that a skin biopsy be done. Needless to say that was not fun at all for neither us nor Golden. Bryan once again held down our sweet boy as the doctor removed the papule on his back. Golden has had many procedures done to him before this, but this one was very difficult for him. I think it may be because he’s getting older, understands more, and can express himself better. He remained grumpy for most of the day.

After returning home for a nap, we returned to the city to take Golden into the PDH to have his regular doctors check out his eye. Yep, viral eye infection. Then we returned home.

About 15 minutes after we returned home, Golden got a fever. We packed up the car and headed right back to the hospital to the Urgent Care Center. After more poking and prodding they were able to confirm that Golden has a virus. Tylenol and some IV antibiotics and we were able to take a very tired Golden home.

It was a hard day for our little man. He’s beginning to be scared of the pain involved with certain procedures and we hate putting him through it.

However, we will continue to do whatever we need to to help Golden beat this disease and have a good life. We’re not sure what that will mean in the next few months. We will meet with Golden’s lead doctor once the biopsy results are back in about 10 days to determine how his treatment will change. (Although I do not believe that the flu vaccine caused Golden’s LCH. I do, however, think that by stimulating his immune system, a flare up occurred. Wish we knew this before he got the flu shot, but all his doctors thought that he should have it. )

In every other way, aside from the occasional cold, Golden has been doing great. He’s an active and rambunctious two year old.

Golden had a great Halloween. At first he didn’t want to wear his costume, but put it on once I explained that he would get candy if he wore it. Golden was hesitant at the first house that we took him too, but once he realized that he would get candy we couldn’t stop him. He literally ran from house to house saying,” More! More! More!” It was so freaking cute that I figured we would work on his manners later.

We hope, will all our might, that the disease is just in the skin and can be easily treated with minimal side effects so he can continue to destroy our small apartment every day.

Good Riddance

Sun, 4 Oct 2009 15:25:55 -0400

I threw away a year of left overs today...
2 bottles of blue bubble gum flavored morphine, grape oxycodone, grape prednisone, 2 bottles of odansetron, 3 bottles of acetaminophen with codeine (grape, bubble gum and orange flavors), nystatin, potassium chloride, megestrol, sufamethoxazole, furosemide, benadryl, ranitidine, bubblegum hydroxyzine, lactulose, dexamethasone eye drops, xopenex, a tube of bacitracin, hundreds of oral syringes and dozens of needle syringes.
It felt good.

End of summer fun, clean scans, and school

Mon, 14 Sep 2009 19:58:36 -0400

Golden enjoyed the end of the summer... that feels really good to write. He deserves to enjoy life and he really has been lately. He seems to feel the best we have ever seen him.

We have embraced his good health and taken him to do all sorts of fun things. He’s been to the aquarium, Natural History Museum, Brooklyn Museum, the Intrepid, an amusement park, the beach, countless playgrounds, back to the High Line, and he has had playdates with Luca, Naomi, Paris, Kai. He’s also been playing with his friends from our block: Patrick and Nia.

He spends his time playing with trains (still obsessed) and matchbox cars (a new obsession) and running back and forth in our apartment saying, “One. Two. Three. Go fast!” Maybe another runner like Grandpa Henry in the family?

We had a visit from Uncle Mark and Golden LOVES his uncle. They even started to dress alike by the end of the week together.
Thanks for visiting us Uncle Mark! We love you.

Golden started preschool. He only goes one day a week for three hours, but it’s so indicative of the progress that he has made. We never seriously looked into preschool because we could not predict if he would be well enough to sign up, interview, and/or attend at all. We are fortunate to have been invited into a co-op that has, so far, been the perfect situation for Golden.
On his first and only day, so far, (he missed the rest of his classes due to a persistent cold) Golden handled the new experience of the school setting like a champ. I was so worried that he would have severe separation anxiety due to his lack of experience in these type of social situations, but he surprised me once again. Not a single tear was shed. He had a great time with his teacher, Miss Carol, and his new friends.
He also goes to music class on Mondays.

Golden got his first black eye followed by a major bonk to his head (sounded like a melon hitting the sidewalk). This led to a CT scan of his head which he sat perfectly still for all on his own. This is really a big deal! Golden was able to sit perfectly still for about 3 minutes while inside a very big, very noisy machine. We were so proud of him that day that both Bryan and I were brought to tears. Everything looked great on the scan.

Golden got his second hair cut and this time it didn’t take the two of us to hold him down for the hair dresser.

Golden also had another full set of scans done to check on the progress of his treatment. All the x-rays were the same as the last set done. Nothing has changed. This is very good news as it indicates that the disease is very likely not active. However, there are still holes in some of his bones where the larger tumors were. His doctors are not concerned with these as they can take years to heal, but I can’t help having wanted to hear that they were completely healed.
Another bit of good news revealed was that Golden’s liver and spleen are no longer enlarged. This is the first time since his relapse that they are in the normal range for size. This is another indication that there is likely no disease in those organs.
Unfortunately, there is no reliable test to tell us absolutely whether there is any residual disease or not. So we have to just stay on course and hope he continues to heal and that the disease is gone.
Golden’s g tube (feeding tube) was also removed from his belly. This is such BIG news. He’s had the g- tube for over a year and relied on it exclusively for months to eat. He has not used it in over 6 months now and his doctors felt that with his latest scans all being good it was time to remove the g-tube. It’s wonderful to see his little body with out the implant. So far the hole that it left behind seems to be closing nicely on it’s own. This is excellent because in some children they do not close on their own and require another surgery to seal the duct where the g- tube was placed. One less surgery and one less tube!

Next we hope to remove his medi port. (A medi port is little button placed under his skin on his chest with a catheter that goes straight to an artery in his heart.) There are two markers that the doctors use to test the function of Golden’s immune system. One of them is in the normal range, but one is still a bit low. The medi port will be removed when both of these are in the normal range. He will be retested in a month and we hope to have an implant free child very soon.

So for now we will continue to give our little man the most “normal” life possible and spoil him rotten with our love and trains, of course.

We just learned this week our beloved Aunt Louisa has stage 3c ovarian cancer. Please pray for her as she begins her battle.