So, we are not starting her chemo today. Delayed again……I am disappointed but not surprised as this has been our pattern. Her ANC (part of her white blood count) was too low to start but she is clearly making platelets and hemoglobin, so that means her marrow is partially recovered and we just have to wait for more white cells.
Maddie is immunocompromised so we will be laying low until we go in Thursday to check her counts again.
Also, as Childhood Cancer Awareness Month comes to a close, I want to share a great article with lots of fabulous pictures. Check it out, it is more pics than writing, but it is touching (at least to me).
I will update after our re-try on Thursday!
We are hoping to start Maddie’s last high dose chemotherapy Monday. If her counts are good enough (please let them be!) to start, we will have at least two nights at the hospital. Last time we got this chemo, Maddie had a high fever and nausea, which are common side effects. She was miserable the entire time we were there between the fevers, the steroid eye-drops 3 times a day, and the intramuscular shots into both thighs at the end. So we hope it goes better this time, but mainly we will just rejoice that we have finished all of her hard chemo. Because of the fevers though, it is possible we will get stuck in the hospital for a little longer than is planned. That’s okay as long as it isn’t too long….and maybe we will get our favorite night nurse (you know who you are!), which makes the nights there much easier.
Maddie has been doing pretty well this week except for her sleeping. She is cutting all four of her canines and another tooth right now. Sometimes even in the crazy life we live, the normal baby/toddler stuff makes life interesting! Her hair has started falling out again so I will be posting lots of pictures because I love her having even just a little bit of hair. So I have been a little camera-crazy lately. So we will say goodbye to the hair again until around the holidays (if I have finally figured out the pattern).
Hopefully this gas crisis ends soon; I think I have enough to make it to the hospital!
So wish us luck on good blood counts Monday and an easy, uneventful last (planned) hospital stay! Please continue to pray that our baby stays cancer-free forever! We are coming up on 11 months since diagnosis this week, which means she has been getting chemo for half of her life. But if chemo keeps cancer cells away, we’ll take it!
Love to everyone,
Liz, Brandon, and Maddie
We had a visit to the clinic this morning to check counts. Maddie had made it all weekend without signs of anemia, so we never got a blood transfusion and we were anxious to see if her hemoglobin was much lower. Incredibly, her hemoglobin had bascially held steady and her platelets have recovered. Her white blood count was nice and high because of the Neupogen injections I have been giving her that help her recover from the hard chemo more quickly. So we no longer have to inject her either. Hooray!
We are hoping her white count will stay high enough for her to start her last round of hard chemo next Monday. Her white count and absolute neutrophil count (ANC) always drop off after we stop the neupogen injections, so we hope it stays high enough to fulfill the count requirements to start high dose Ara-C. Her ANC was almost 6000 today so we hope to be good to go on Monday.
This also means that she is no longer immunocompromised so we hope to get out and do some fun things this week before going in the hopital next week. We love this fall weather here in Charlotte and are spending as much time as possible outdoors.
Also, I want to remind everyone about the Milestones Walk November 15th. Please click here to join our team if you plan to join us and haven’t done so already.
You can now subscribe to this blog and you can receive my updates in your email by clicking this link or the link above on the right hand side. You will not have to log in when I update and you can stop the subscription at any time. For a little bit longer, I will notify folks via Carepages that there is a new update here, but if you sign up here, please turn off the updates from CarePages so you don’t get it twice.
Please keep Miss Maddie and all of the other children fighting cancer in your prayers! Don’t forget, it is still Children’s Cancer Awareness Month!
Love to everyone,
Liz, Brandon, and Maddie
We went in today expecting that Maddie’s white count would be very low and that she would probably need a blood transfusion. Her hemoglobin was 7.9 but she is not yet acting like the anemia is bothering her, so we decided to hold off on transfusing until tomorrow or Monday (if we can make it that long). Her WBC was actually .5 and she had a little ANC (150) so it appears that she is already recovering from last week’s chemo thanks to the Neupogen injections I am giving her daily. She is still very immunocompromised, but at least she is now on the way up.
We will probably be in the clinic for a transfusion tomorrow. We plan to enjoy a quiet weekend at home while we wait for her counts to come up more. We will miss my dad’s birthday weekend down in Charleston. So Happy Birthday Dad! (I won’t tell you how old he is but he says he feels like he isn’t a day older than 30, but I am 30……) Also Happy Birthday to Shawn who turns the big 3-0 this Saturday! I hope we can get together sometime soon with each of you!
Go out and enjoy this beautiful weather! Fall is almost here…..
Love to everyone,
I am trying to get a little more organized in dealing with the Milestones Walk November 15th here in Charlotte.
First of all, it is a very good cause to support and we would appreciate any donation, no matter how small. There is a lot of literature on the CureSearch site that I would like to share, but I don’t want to inundate your inboxes. There are very few “cancer” charities that support pediatric cancer research because of the small number of children affected each year. Drug companies do not spend much money researching new drugs for cancer kids either because of the small number of patients who need them. That is why we are walking to raise money for CureSearch.
Second, I appreciate all those who have already donated and who have joined our team. I am planning to have team t-shirts made, and in order to do so, I need to know about how many people will be needing t-shirts. So if you are planning to join the team but have not had time yet, please join today or at least shoot me an email (at firstname.lastname@example.org) to let me know that you plan to participate.
Third, we are still hoping to do some sort of function after the walk, but it may just be a gathering with some refreshments to thank our team somewhere in the park. I was originally envisioning this as a goodbye to many folks in Charlotte as we make the move to Quantico. Now it is looking more like we will move after the holidays, so we don’t need a goodbye party just yet.
And finally, depending on how many people join the team, we may actually see if we can get corporate sponsors who would have their name or logo on the t-shirt. If you know anyone who might be interested in sponsoring us (probably with a minimum donation of around $500 to get on the shirt), please let me know.
The link to the team page is http://host.curesearch.org/site/TR/Walk/General?team_id=2630&pg=team&fr_id=1160&et=Tn7yUCJWmSqOCNCg7RiGHw..&s_tafId=2990
You can also just go to the main page for the Charlotte walk at http://host.curesearch.org/site/TR/Walk/General?fr_id=1160&pg=entry
And then click on Join a Team on the lefthand column. Enter team name Milestones for Maddie, and then once you have clicked on our team, follow the steps to register to join our team.
Thanks so much!
Maddie’s blood counts weren’t high enough to start chemo during the week of 1 September…but she amazed us as usual with her unbelievable strength and super attitude!
I will be updating this site soon, but I am moving Maddie’s info over from Carepages since I want to be able to do more with the site where people come to find out how Miss Maddie is doing!