Scarlet Update

These pictures were taken last Thursday near Pike's Place in Seattle. We decided it would be fun to go on a walk since we were so close to downtown Seattle and still had a wait before our next and most exciting appt. at the SCCA.
A friendly old man on a tour offered to take our picture. I immediately said "yes" because looking around I wouldn't have trusted anyone else to take it for us. There were a lot of iffy people there. It was such a beautiful day in Seattle!
Scarlet really liked the seagulls and watching people. It's always such fun watching her learn new things and take in new experiences.

As to her "exciting" appt. We had a meeting with her Continuing Care transplant doctor Jean Sanders and nurse Denise who has followed Scarlet's care for a long time now. Scarlet and Grandma were in the playroom on the floor below having a great time so we could concentrate on what they would be telling us. I would never have allowed Scarlet to play in a "playroom" except at SCCA because everything is cleaned in between patients and only one family is allowed at a time. I wanted to add that just in case you were wondering about her and germs, etc.

Dr. Sanders had most of the test results with her and reviewed them before giving us any answers to our questions. They have drawn lots of Scarlet's blood over the past month and can tell alot from a little. She also had the results of the bone marrow draw and skin biopsy which showed little to no GVHD in the skin. Her bone marrow results were pretty close to being exactly as the last draw. She has 97% donor in her CD-3 ( T-cells) and only 6% donor in her CD-33(B-cells, granulocytes). They are pleased with her T-cells and are ok with her B-cells being only 6 percent donor. They say that is pretty common and not necessary like with the T-cells. Scarlet's ANC (absolute neutrophil count) has been fluctuating strangely over the past several months and their response to that is "She's just being Scarlet" they can't tell us why one day her ANC is 800 and the next 7,000. A normal ANC is 4,000-7,000 if her counts get lower than 500 she could make herself sick and create sepsis in the body from her own flora.
Her overall T-cell function is still weak and they expected that because she is on so many immune suppressant drugs and expect that she will go up in numbers when the doses taper and she is finally free of immune supressing medicines.
We went berry picking while staying with the Quimby family in Seattle for our appts. They brought me the sacrament nearly every Sunday while in the hospital with Scarlet. Mandy and Tom have become great friends and helped me so much while going through transplant with Scarlet.

The plan is to keep weekly blood draws to test her ANC, CMV (cytomegalovirus-which has been negative for 3 weeks now! Yea!) , etc. She will be having her hickman line removed in October and replaced with a portacatheter, the scheduled date is for October 30 and she'll be seen for an eye appt. the following day, so we'll be spending Halloween at the hospital just like last year which is actually great because they have an awesome Halloween party for all the kids on the SCCA floor at Children's and I'm sure they will love to have Scarlet there.

I was a little nervous about removing her hickman line because she would still be having the weekly blood draws and will still be getting IVIG each month which is an intravenous infusion that takes several hours. I was worried they would have to put an IV in each time for that and poke veins for blood draws. Scarlet's had enough of that in her life and they had difficulty getting veins and would have to poke several times, it's awful, I would have rather kept the hickman.
But the port sounds great. It will be in the same spot as her hickman line and all they will do is poke where it is and have access to a vein. So, she will still be getting poked but they said they can numb her first which works for me. I'm excited to give her a bath and not worry about her lines falling in the tub or her tugging on them and then needing another repair...which is another story in itself and I will certainly blog on that later!

Mandy and Tom with their baby Finley on our way to the berries on the Gilman trail nearby.

Back to her results. The doctor said she is ok to go to the store with me now and even to church and the park too! We will always have to be cautious about the sun and UV rays with her skin because she will always be susceptible to skin GVHD (graft vs. host disease). We'll still need to keep her away from sick kids or kids who haven't been immunized atleast until she has been. Which is also news to us. We swear they told us she would never get live immunizations but now they are saying they will immunize her next year some time. They plan to give her some non-live immunizations next month after we talk with the immunologist. We have an appt. with them in a week or so and will know more then. I'm a little freaked out about giving her immunizations period. I've always been afraid of autism, which, I know isn't as bad as having your kid die from the disease.


Grandma Debbie bought Scarlet a monkey backpack. Scarlet LOVES Monkeys!!

So, if she gets a cold she'll be ok, if she gets the flu even, she'll be ok...hopefully. Even normal healthy kids can die from the flu. With all of this in mind we are still supposed to be very careful with her especially until she has tapered completely off her medicines.

I can't think of anything else Dr. Sanders may have told us, but we did meet with her Kidney doctor, Dr. Hingarani on Wednesday. She said she didn't find any proteins in her last urine test. That they will do another one in 3-6 months and will plan to do another Iothalamate test (check the archives for details) next year. She still has chronic kidney disease and she doesn't know if it will reverse she is more concerned about stopping it's progress into stage 4. They stopped the medicine, foscarnet, that was the culprit causing the kidney disease, in May. Dr. Sanders said that most kids recover but Dr. Hingarani, the kidney specialist, can't give us any guarantees. We are torn in what to believe but are certain Heavenly Father will continue to take care of her. She also reminded us that kids with kidney disease often have growth issues and that they will continue to monitor her growth and if needed they will give her a growth hormone. However, Dr. Sanders was actually really pleased with Scarlet's growth, she called it "Catch up growth". She is now in 12 month clothes which for us is exciting. I've loved having my tiny baby stay small for so long but it is time for her to grow.

Scarlet also had the misfortune of seeing the Ophthalmologist at Children's. I say that because she had to have yellow drops put in her eyes to test for dryness associated with GVHD and then have her eyes dilated. She hated both. Dr. B noticed Scarlet had some pseudopapilladema in her eyes. It is nerve swelling that can cause permanent eye damage. This time the cause is from her FK-506, Tacrolimus drug. She wants to see her again, and that is the appt on Halloween. I haven't had a chance to read up on papilladema yet and if you met the Dr. she is great but a little out there and didn't get that I didn't understand a whole lot of what she was saying and wasn't following her as she expected I should be. Scarlet also had a visual acuity test done the next day to test her vision clarity. Supposedly it is ok, which is great! So after the re-test they will talk with her Transplant dr. about whether or not to taper the medicine quicker to spare her eyesight. More on that later.

She also saw the SCCA (Seattle Cancer Care Alliance) Dentist. She was a German woman from Berlin. She told us that she often finds kids with kidney disease have bad teeth which explains the slight graying in Scarlet's top teeth. She also told us we need to start flossing her teeth and getting her to start brushing with an actual toothbrush and not the little finger one. She said that before she tried looking into Scarlet's teeth then she learned it's nearly impossible. We do brush her teeth every night, but flossing too? Yeah, right! We'll try, but I doubt she'll let us near her with floss.
Our busy week included getting X-rays for Scarlet too. They did a chest X-Ray and then they did something called a bone age where they check the growth of her bones. They only needed a shot of her hand which is pretty interesting.

One last thing, if you can remember, Scarlet's cause for having SCID was due to the lack of the ADA enzyme which created a toxicity killing off all of her infection fighting cells. They checked her for her ADA enzyme (which is in every cell in the body) and there were some strange results. The transplant doctor deferred to the Immunologist, who we will be seeing in a week or so. The normal on one of the scales was approx. 40-60 and Scarlet was only .8. She didn't know what this meant, if it was normal or not. In going through the transplant with Scarlet you come across a lot of deferring and we have become used to waiting to hear more. I'm a little worried at what this might mean and whether or not it has anything to do with the fluctuating ANC cells. We just don't know yet and hopefully they will. More on that later.

Just another funny video!

Today is Sunday and Scarlet's 2nd time going to church. We took her to Sacrament meeting like they told us we could. It was wonderful and difficult bringing her with us. We kept passing her around to each other to keep her distracted, she's getting really good at the "back bend and slip out of your parent's hands" thing. She was fascinated with the piano playing. She watched her play nearly throughout the entire choir song. She loves playing the piano, before it was slamming her hands on the keys but now she carefully touches each key and it is really beautiful to me, probably because I'm her mommy.

She's gone to the store a few times with us. We of course lysol the shopping cart and are careful not to let her put her hands in her mouth, we also are sure to carry hand sanitizer with us. I am reluctant to use it too frequently because I've heard babies and kids have tested positive for alcohol in their blood from overuse, just in case you were worried. But, keeping her safe from germs is most important to us so we use it when it's needed.

Looking over this blog-turned novel, you really are a true friend if you've endured it's length.
Thank you for your prayers for Scarlet. Can you believe how well she has come out of this??
I believe in miracles and for us she is proof enough.