First Blood Counts post-chemo

All of Madelyn's counts were good on 3/1, but this is the time where they will continue to drop. We have another appointment on 3/5 to do repeat blood work. We are giving her the Lugol's solution, which is simply iodine tincture. This is to protect her thyroid from the radioactive iodine required for the MIBG scans. We will have 3 days of scans 3/6-3/8. We're not sure when we'll have the results. These scans should show any neuroblastoma in her body. This depends on how the neuroblastoma tissue takes up the dye. The reasons we are getting this done is that now, since she has started chemotherapy, the tumors may actually change and the neuroblastoma tissue may start to go away. It is not possible to differentiate between a tumor with NB or one that has shifted to another type of tissue. So, the MRI might show the tumor is the same size, but an MIBG would hopefully show less or no "glow" from the dye, thus the NB tissue would be going away.

Madelyn is her most vulnerable this weekend, so we will be camping here. Sheila is running out today, but Maddy is staying put with Daddy.

We are still trying to sell the boat to help pay for medical bills. Since I changed jobs, we don't get a full paycheck for me until 3/16 so things are a little tight. Hopefully it is only temporary. ERA realtors have sent some money through their inter-office mail. We are probably going to refinance Sheila's car loan for a lower rate and consolidate her student loans. I know this may seem a little too much info, but I want you all to know that have offered to help that we are trying to get things in order so we can weather this. If we do need help in the future, it won't be before we have exhausted our
options.

I want to take this opportunity to thank Judy Lennon for taking the lead on our fundraising efforts. Larry Maio, our pastor at Seacoast, brought our situation to the congregation last week and they sent us $100. It feels good to know that in this cynical world we live in, people are still good and love one another.

I am going to stop now as I am being beckoned to help clean the house. THank you all and we love you very much.

Round One

I am sorry we haven't posted anything. The wireless connectivity here at the hospital has been a little haywire.

Madelyn went to recovery at around 12:45PM on Friday. She had some oxygen saturation issues in the OR and recovery and had to have her upper airway frequently suctioned and received a repeat breathing treatment in recovery.

The central line was placed in her facial vein/internal jugular. They tried to go for her external jugular which would be a little off her center line of her body, but it was too small. She has two small incisions on her neck and one on her chest. The port-a-cath was placed under her skin between her right nipple and clavicle.

We came up to the room on Friday at around 2PM. Madelyn continued to recover well. She was a little groggy and was really congested. In surgery they gave her a good amount of fluids and this would make her sound more wet.

She began her first chemo treatment at 7PM on Friday. This consisted of the first drug, Carboplatin, going in over the course of an hour and then a dose of VP-16 (etoposide) @ 8PM given over two hours. They then push more fluid. When the first drop of carboplatin went in, I had trouble holding back the tears. You want to protect your children and keep them from harm. You baby-proof your home so they don't drink the Drano. Then for some reason we cannot understand, you're forced into a situation where you have no choice but to shoot them up with stuff that can eat through plastic, which is why special tubing and glass bottles of medicine are what they use. We have to change her diapers with gloves on so we don't absorb the small amounts in her urine. Crazy...

Friday night was pretty uneventful other than our crossing the threshold of innocence. We have poisoned our child, but its all we can do for her now.

Normally, they would give her the daily treatments 24 hours after the last one began, but to get us out of here at a reasonable tim eon Sunday we have changed the interval to 20 hours. Saturday @ 4PM they began just VP-16 alone using the same delivery as Friday. This went fine. Infants seem to tolerate this first round very well, and to be honest, Madelyn is handling it better than I am.

So, its Sunday morning and the last VP-16 for the weekend is scheduled for noon. It will take two hours to run in and then they will push some fluids and send us home.

We have a book from the patient educator with all of our instructions. I will have to review it to be sure, but we're going to be in the clinic a lot for blood tests and checkups.

The drugs, in a very general sense, work to stop actively dividing cells from dividing. The other effects are that her immune system will be suppressed due to the inhibition of good cells like red blood cells (RBC), white blood cells (WBC), and platelets will be impacted as well. The effect of each is:

Low RBCs (Anemia)
RBCs carry hemoglobin, which carries oxygen through the blood. When this is reduced, Madelyn will be a little tired and fatigued. She may show signs of paleness in her skin and especially her mucous membranes (inside her lips and eyelids).

Low WBCs (Neutropenia)
WBCs fight infection, so she will be more prone to bacterial infections. For this, we are giving her antibiotics.

Low Platelet Count (Thrombocytopenia)
Platelets are the clotting components of the blood. With a low platelet count, Madelyn can have issues with bleeding. If she is cuts, gets nosebleeds, etc. we may have issues stopping it. She may get more bruises. We have to be very careful of her bumping her head.

We just spoke with the team and we are going home this afternoon. We have our instructions and will be back in the clinic on Thursday. We have an MIBG scan scheduled for March 6th as well as a hearing test (one of the meds can affect hearing). We had an echocardiogram and her cardiac function is good. She still has a small opening from her right to left atrium but this should close as she continues to develop.

We need to make some calls as her prescriptions are not all that common for pharmacies. We'll update you as things develop. Thanks for your continued prayers. I also wanted to thank our pastor Larry Maio for coming by on Friday. His coming by was a great relief. Also, Judy Lennon came by and is taking the lead in helping us establish a fund for Madelyn's medical and non-medical needs. Judy also brought by Madelyn's new favortie toy, Froggy.

Well, we need to get ready to go home and for her last chemo treatment for this round. The next round will be March 15th and will be all day in the clinic, but no overnight stay in the hospital.

Thanks again for everything!