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

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12 thoughts on “More excitement

  1. Liz,
    My heart is just breaking for you, because I know how it feels to feel so out of controll and just want to help your child and you can’t. Sometimes I just felt like running and screaming, only there was no where to run and know one to scream at. But one day, Praise God, it started to get better, and it will for you and Maddie also. Just keep your faith, even though it is hard, God will see you through this.
    Give Maddie my love and a big hug from Shelby.
    We love her so much, she is a great little girl. Call me anytime if I can help, or if you just need someone to listen or be your someone to scream at (704-220-8506 or 704-282-0955)
    Much Love,
    Gina Price

  2. I have been following your story for awhile. I hope I can give you some encouragement. My daughter was having numerous seizures between the ages of newborn and two years when we finally seemed to get the right dosage of med. She was extremely far behind developmentally. She was in an early intervention program and received OT, PT, and Speech two more days a week. We were given things to work with inbetween those days also. Well, she still has global developmental delays, but not as many. We have accepted the fact that she will never ride a bike or do anything that requires a lot of balance. She has problems with attention and retention. We have to teach her things more than once in order for her to retain it, but she is in High School. She has accomodations, but she is surviving. She is 19 years old now. She has MDS so she also has a type of blood cancer- her’s is extremely rare- especially in children. You are right. We, as parents, have to learn to love and accept our children that we have. We have almost lost her a few times, and to tell you the truth, I would not know what to do without her.
    Hang in there- you will get through this and so will she as she has the best parents possible. Hold tight to your Faith. You have so many people praying for your family. ( Us military families have to stick together!)

    Margie- CP MommasFIght Mom to Anna CP AnnasHugsAndSmiles

  3. I am so sorry for all that Maddie’s having to go through. It is heartbreaking and amazing how brave and resilient our kids are. Your family is in my thoughts and prayers.

  4. DearLiz: Sounds like you and Maddie have been put through the ringer and not hung out to dry yet. I am so sorry for all that your famly is going through. I am aware that as mommy, maintaining your strength and well-being is very tough. I know you will prevail you are strong and so is beautiful little maddie. I noticed that you may move to Jacksonville NC. It’s only approx. 4 hours from us, just so you know/ you already have friends wherever you may go. Hang in there!! If you need to vent or cry or anything feel free. God Bless you all and BIG HUGS TO YOU ALL

  5. Liz – Happy Happy Mother’s Day! I’m praying that your Mother’s Day gift for both you and Maddie is a “boring” week very soon. I think of you three every day. Lots of love, Carrie

  6. Liz,

    Whenever I read your updates, I am more and more amazed at your strength, compassion, and love for your little girl. The bonds you have created are stronger than that of the average Mother and daughter because of all that you have gone through together.

    My heart aches for you, and I hope that this Sunday you will be blessed with a peaceful day with Maddie and Brandon. I always have you in my thoughts.

    Love,

    Susan

  7. Liz
    Everytime I read your updates -my heart truly aches for you and Maddie-I am in awe of your strength. It is amazing to me how day after day you meet the challenges with such strength and resolve (I just don’t know that I could have been so strong).
    Maddie is so precious-truly a miracle baby with an equally miracle of a Mom.
    You are all in our prayers- I hope that you can have a stressfree relaxing Mother’s Day!!! and some good news just around the corner!!!
    Love,
    Sue

  8. Liz –
    Happy Mother’s Day. You have been beside that precious child all the way and you both deserve a break. Have a wonderful weekend. Tell your mom happy mother’s day for me. She has been a trooper through all this with you. I know she has been a lot of support & comfort for you. God Bless all of you.
    Love,
    Loretta

  9. I understand that it may not feel like strength. You just do what you have to do. Keep posting. I check in on you. Sounds like a lot of extra complications to an already complicated situation.

    Happy Mother’s Day.

  10. Liz,

    Wishing you a Happy Mother’s Day! You and Brandon hang in there! Our thoughts and prayers are with you all every hour, every day. Baby Maddie is very strong and resilient and she is such a cutie! CALL if you need anything taken care of here in Jacksonville!

    Jimmy, Dawn & Simms

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