More excitement

Someday soon I hope to type the words “Boring week here. Nothing much to report.” Unfortunately for our precious little girl, issues just keep cropping up.

Last Monday, Maddie had surgery to replace her port. The surgery went well and the recovery seemed pretty normal. She also restarted her oral chemotherapy that night. We were happy to feel like we were finally trying to keep the leukemia away again. But by Tuesday evening, her seizures seemed to be getting worse. This made us fear that the chemo could be causing it. There was also
a possibility that it was an effect of the anesthesia the day before, as sedation can sometimes lower the seizure threshold. We decided to give the chemo another day or two and see if the seizure activity returned to the previous level. But it did not, so we stopped it for a few days to see if that would cause them to return to previous levels. So far, that has not worked either, so we are left not really knowing what may have caused the change in frequency.

This Monday we entered the clinic full of optimism, knowing that Maddie’s new port would work beautifully. Instead, we found ourselves in the same old situation as with the old port…..no blood return. I was so disappointed (and frankly, angry) that we just left the clinic once we had tried all the standard tricks to try to get it to work. We decided we would return today in hopes that it was just a fluke. Maddie needed to have blood counts drawn and she was already a week overdue to get her monthly IV antibiotic. She also needed to have blood chemistries drawn because we needed to check her Potassium level again. So that meant without the port, she would have to have blood drawn through a needle; they cannot get what they need with a finger stick. Maddie was really upset after having had alot of action around her new incision at her port site Monday, and I was just too over our day to make her go through anything further.

So we were due to return to the clinic this afternoon. But this morning in the bath, I noticed a strange bulge just above where the new port had been inserted. Much to my dismay, I could actually feel the port’s catheter line pushing outward against her skin on her breast near her armpit. It is not something we ever saw with the last port, and I knew it had changed since her bath last night. So we called the clinic and Kelly had us come on in then. She set it up so that we immediately got a chest x-ray and met with the surgeon’s nurse to see what she thought. The x-ray showed that the catheter which leads into the right chamber of Maddie’s heart had already shifted considerably since its insertion 8 days ago. But it was still in the heart, though not really a place where it would work reliably. So the surgeon’s nurse felt we should access it (insert a needle) and see if it worked and then decide what to do about it. So we headed back up to the chemo clinic where Kelly accessed her. Again, no blood return. Right about that time, Maddie’s oncologist walked in, took a look at the x-ray today compared to where it was when inserted last week, looked at Maddie’s chest to see where the catheter was bulging under the skin, and said, “this port is going to have to come out.” So Maddie has to have another surgery to remove this port.

We have decided to try something crazy and see if Maddie can tolerate blood draws without a port. Maddie still does not understand why we have to stick her either in her port or a vein, but the port can be more painless and is usually more reliable. Sadly, that has not been the case for us lately, and we are going to try it for a month and see how she does with finger sticks 3 weeks out of four and hopefully just one needle poke per month. Of course, if anything weird comes up (which seems like weekly if not daily for us) we would have to start an IV, which is really torturous for her, or we might just have to get another port.

This is certainly not the way we hoped this week would go. But there is a possible upside. Brandon graduates from his school in Quantico this week and actually already had the whole house packed up and moved out on a truck yesterday. As soon as our housing is ready, he will be moving back to Jacksonville NC. Because he will likely deploy this fall, Maddie and I really would like to live with him before he has to leave. It would be a little easier to spend more time in Jacksonville if we can get her used to peripheral blood draws, as there is no one at the hospital in Jacksonville or Wilmington who could access her port for blood draws. Also, the port means a trip to the ER every time she has a fever because of the risk of infection. We really don’t love the idea of having her treated in an ER at a hospital that does not have pediatric oncology patients. We are just used to people who know how to handle cancer and ports, and it is scary to think of going elsewhere. So if we find that she can get by without a port it may make it easier for us to actually live together in Jacksonville.

On another subject, her seizures are no better, and we have just started Topamax along with the other seizure med, Vigabatrin, in hopes that we get some relief from seizures. We met with Early Intervention last week and it was pretty eye opening to actually take stock of all of the skills she has lost since the onset of her epilepsy. She is at least a little behind in everything, but she has alot of work to do to catch up in both fine and gross motor skills. We fear that she will not be able to improve much until we can get rid of the seizures.

So please keep her in your prayers. She really needs a break, and it just seems like it has to be coming sometime soon. She is the most lovable, cuddly, sweet, amazing child I have ever met and this is just not fair that she has to go through all this. As we approach this Mother’s Day, I am the proudest mama ever. But I just wish for something to be easy for her.

Happy Mother’s Day to all the moms out there. Please take a moment to feel truly blessed if you have healthy children. There is nothing better in the world. I wouldn’t trade my amazing child for anything but I would give everything to be able to heal her.

Love to everyone,
Liz, Brandon, and Maddie