Week 2 + ER

Well I keep thinking I need to update our blog for our other kids too. . .Courtney is 5 1/2 months old and is now liking food! She bawled the first time we tried to give her rice cereal. The kids want to feed her every time she eats, but she is still trying to figure it out.

Brady 'graduated' from preschool. It was actually pretty cute with his cap and walk with the graduation song. He is definitely having a harder time then the other kids right now, probably because he doesn't get quite as much attention lately which really throws him for a loop.

Lauren is still a trooper. She got her 2nd week of chemotherapy yesterday. She did well until around the time we were eating dinner. She was acting super tired and took 2 bites of dinner (her usual quota - 2 bites of food a meal since surgery). Brock sat by her on the couch and said she felt warm. Sure enough she had her first fever since starting chemo. I have to admit I took her temperature in both ears a few times. . .I didn't want to take her up and find out she really didn't have one. Well it was 102 degrees so I did what we are supposed to do and called the on call oncologist. She instructed me to head right to the ER for Lauren to be evaluated for a bacterial infection in her blood (since she has a central line). Sure enough her temperature was 38.9 Celsius when we got to the ER and she definitely started feeling sick while we were getting checked in and she was being assessed. She actually started to fall asleep during one of her assessments and looked pretty bad. She started looking better once her temp came down with Tylenol and after a few fluid boluses and a dose of Rocephin (an antibiotic for possible bacteremia that gets dosed every 24 hrs). Next step is to call the clinic this AM and see if we need to do anything else. They drew another CBC (complete blood count) and blood cultures. Her ANC went from 1500 pre chemo that day to 2700 with some immature white blood cells. She in anemic with thrombocytopenia, but those levels will continue to drop some as well as her WBC and ANC in the weeks to come. Who knows if it was stress from chemo that day vs an infection. By the time we got to go home she was feeling better and has actually slept all night! I never would have guessed we would have had her first ER trip by now, she has only had her port accessed 2 times before this visit. . .I had wishful thinking that we would get through all her treatments without a visit. Now I am sure this probably won't be the last.

1st chemo dose - check!

Lauren had her 1st dose of chemotherapy today (Actinomycin-D). She goes in again tomorrow for a second chemo drug (Vincristine). So far, so good. It was a little traumatic for her to get her port-a-cath accessed, but she survived. We are going to try a numbing cream instead of numbing spray next time to see if this helps.

Her lab work was reassuring WBC 8,000 (normal 6,000-17,000) and ANC 1800 (normal 1500-5000). She also received an antiemetic that should work for 24 hours. We have Zofran for any breakthrough nausea as well and pain medication for pain control. She also got a fluid bolus because her appetite is still not back, and we are having a hard time getting her to drink anything! Now for the weekly regimen to begin. . .Septra twice a day Mon/Tues each week (an antibiotic for prophylaxis - to prevent pneumocystis pneumonia, a very dangerous form of pneumonia that children with cancer are at greater risk to develop) and chemotherapy each Wednesday.

She gets lab work each week before her chemo and also will get various tests (CXR, CT scans, and ultrasounds) throughout the course to check for any metastatic cancer.

Her final pathology report is back. She has nephroblastoma AKA Wilms tumor, favorable histology, stage 2 cancer. The next step is to determine if she has LOH (loss of heterozygosity - studies show that tumors with certain changes on chromosomes 1 or 16 seem to be more likely to reoccur after initial treatment). This test will be back in another 7-10 days. It will determine if she is treated for 25 weeks with an additional chemo drug vs the standard of care with 18 weeks of 2 chemo drugs. Only about 5% of Wilm's patients have this, so chances are good that her test will be negative.

She is a trooper and has done amazing. As long as she has some sort of Disney princess to play with all is well. We are just starting this long journey, but so far things have gone as well as can be expected. We are praying for continued success.

We Made It!

Yay! We made it home this evening after a couple more pre-chemo tests (echocardiogram, EKG, and lab draws). Who would have known a week ago we would have been through so much. Lauren is doing great, still sore and a little fatigued, but doing AMAZINGLY well compared to what I was expecting. She is set to start her first dose of chemotherapy on Wed, may 19th (we should also have the official pathology report as well as the LOH testing back to see if she will need chemo for 25 weeks with 3 drugs vs the planned 19 weeks of therapy with 2 drugs). It now sounds like her cancer may be a stage 1-2 since the pathology is reassuring and so far they haven't seen the tumor penetrate the renal capsule (there is still a questionable area they will be looking at. . .they had to plate well over a dozen slides to study, a more involved process then I pictured).

Hopefully she will not have too many side effects of the chemo and will tolerate the therapy as well as she can. We will go weekly for the whole course outpatient, which we are glad for. She will have weekly lab draws to assess her cell count among other things and various ultrasounds and xrays too. I was also shocked by the follow up care she will need after her chemo is completed. . .she will be seen monthly for the first year, every 2 months for the 2nd year, every 3 months for the 3rd year. . .and be followed for about 8 years after her diagnosis/treatment. It is a much longer, more involved process then I had imagined, but we are definitely taking it one step at a time.

Now to have a week of normalcy at home (at least as normal as it can be) before therapy begins.

Preliminary Report

Still waiting. . .but the unofficial pathology report is reassuring, it doesn't look like it's in the lymph nodes. From a surgery standpoint she is doing amazing and is ready to go home, unfortunately we are waiting to hear from the Oncologist to see if we are starting chemo right away or if we get to go home for a couple days. . .we'll see sometime this morning.

She's BACK!

Lauren is back to her 2-year old self. . .(attitude and all) which we are grateful for. She is up and about and doing really well. She got her epidural out this morning and is now getting her pain meds by mouth. No more lines and tubes excpet for an IV for any breakthrough pain and monitoring cables. She is eating a little better and even had some gas today (who knew that would be such a cool thing!). We are still waiting to see what is in store for us next. Thanks for all the continued care and concern.

Moving and Eating

Lauren is doing amazing today! She actually stood up AND walked! She is a little shaky and needs help (although she doesn't think she does). Now she is allowed to eat as tolerates, no more 1/2 Popsicle every 3-4 hours which makes her happy. Her appetite isn't like it was yet, but I'm sure it will improve. No vomiting, which is nice, now to getting things moving. She said her tummy rumbled tonight, so maybe her gut is starting to work. Now if we only new the results of her pathology. . .Wednesday seems so far away!

Poor Lauren. . .

As most of you know out lives were changed forever yesterday. Lauren was just diagnosed with cancer. She had been complaining intermittently about a tummy ache but just had her well-child visit about 3-4 weeks ago, so I decided to palpate her stomach and I discovered a mass. I took her in to the Pediatrician and after his exam and an xray of her abdomen we were sent up to Primary Children's for what I feared, but knew was likely the case. She had some additional tests; an Ultrasound and CT of her chest, abdomen and pelvis to look for metastases. It has been a very quick, overwhelming experience, but we are blessed to have such an amazing hospital so close to out home. We are unsure the exact type of cancer she has, other then it appears to originate in her kidney; likely a very large Wilm's tumor with lymph enlargement - our hope is for Wilm's at this time over the other types of cancer they are considering since it has a higher cure rate/better prognosis then the others. She is having more testing done first thing this morning followed by surgery to remove the mass, her L kidney, ureter, and possibly her adrenal gland, and placement of a porta cath for chemotherapy. We just pray that they are able to proceed with surgery and remove all they need to today, since the mass is quite large (10 x 12 cm) and very close to important blood vessels and organs. I just thought you all might want to know what was going on. We will be at the hospital all day most likely and at least 5-6 days after her surgery just recovering. Chemotherapy generally start a week after surgery and can go on for about 18 weeks in most cases but we won't know what comes next, until after her surgery, since staging of her cancer takes place then. Since my mom is helping watch Brady and Courtney today, we will be touching base with her letting her know the updates as we can.