Thanks for the opportunity to share a little bit about my family, Miggy! My name is Kristina. I’ve been married to my wonderful husband Chris for close to 12 years now, and we have two children: Brenna (8) and Jonas (5). My husband is an editor, and I do freelance editing from home.
Jonas was diagnosed with Rhabdomyosarcoma, a fairly rare form of childhood cancer (about 300 new cases are diagnosed each year in the U.S.), when he was 3 years old. He’d had what we thought was a sinus infection that just wasn’t going away, and I knew there had to be something else going on. I’d prayed for guidance, and suddenly remembered that he’d stuck a raisin up his nose about a month before. I took him back to the pediatrician and asked if perhaps his problems could be because I missed a piece or another could be stuck up there. The doctor agreed that it was a possibility, so sent us over to get an ENT doctor to take a look. No raisin, but they found “polyps” in his nose. A piece happened to fall out, and the doctor decided to have it biopsied, even though that wasn’t standard procedure. Jonas had trouble with the anesthesia they used to knock him out to look up his nose, and we ended up staying in the hospital overnight. The next day, we knew there would have to be further testing, but cancer wasn’t even on anyone’s radar. About half an hour before we were supposed to head home, the results from the biopsy came back. Cancer.
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Miggy: Hi Kristina, thank you so much for participating in todays spotlight. I can only imagine there are few things scarier than being told your child has cancer. Can you take me back to the day your son was diagnosed--do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Kristina: My first reaction was shock. My body started shaking and I couldn’t get warm. The nurses had to bring me several warmed blankets because I was shivering so badly. It was really strange—my body just shut down, and my mind wouldn’t stop racing. I was alone with Jonas when the doctor told me the news because Chris was at home with Brenna. I quickly gave him a call and let him know he needed to come to the hospital right away. Luckily, we had a close friend nearby who was willing to take Brenna for a few hours.
I was so afraid, because there were so many unknowns. We didn’t know how far the cancer had spread, what his chances of survival were, what the future would hold for our sweet little boy. Jonas has always been a bundle of energy, and I was afraid the cancer and the treatments would take that away from him. I worried about how everything would affect Brenna, too, since I knew we’d have to spend a lot of time focusing on Jonas’s needs.
Now, while I still worry that he’ll relapse and that the cancer will come back, I know that Jonas is a fighter, and that we can get through so much when we come together as a family. It was strange how quickly his treatments and medications just became part of our normal reality. Jonas was still Jonas and many friends and family members helped us to help Brenna feel loved and included.
Miggy: Cancer--like so many conditions--presents differently in each person. Tell us about your sons particular form of cancer and the treatments, procedures and care-taking that was involved during this time.
Kristina: Rhabdomyosarcoma is a striated muscle tumor cancer. It’s more often found in boys, usually between the ages of 1 and 6. Jonas’s tumor was growing off the back of the septum in his nose. His was the embryonic type (more favorable prognosis) in an unfavorable site (parameningeal cavity). We were very lucky to find it when we did, because it hadn’t spread far beyond the main tumor site yet.
Because he was 3, I was with him for everything, and would stay with him during his hospital stays. Many of the doctors would let me stay during his various procedures and scans, too, which I was happy about. It’s not fun to watch, but I felt like I needed to witness everything so I could answer any questions Jonas might have, both now and in the future. It was hard on Brenna, because she was in kindergarten, and Jonas and I were away at the hospital a lot. Luckily, we live only 7 minutes away from our hospital, so she was able to come visit, as well as spend a lot of time with friends and Chris.
Jonas had to have bone marrow biopsies, MRIs, and PET/CT scans to help determine his treatment. First, there was surgery, to de-bulk the tumor. They couldn’t take all of it, because of where it was. They also took his adenoids out and put ear tubes in as preventative measures. He had 24 weeks of chemotherapy treatments, and 20 days of radiation therapy. Four of the chemo treatments were hospital stays because one of the chemo drugs they were using burns the bladder if the patient isn’t super over-hydrated, and IV fluids are the easiest way to help with that.
He also had a port put in, on the right side of his chest. This is so they wouldn’t have to keep putting in IV lines into his various veins—he just had one central line installed, and they could access it through the port each time.
The hospital and the pediatric oncology clinic became our second home. He had three different chemotherapy drugs, all with their own host of nasty side effects. One causes nerve damage. For several months, Jonas physically could not lift his eyelids all the way up, and the drug can cause pins and needles feelings in the hands and feet, among other issues.
The radiation was the hardest part. He had to go under anesthesia every day during the 20 days of radiation therapy (when you are only 3, it’s hard to lay still as long as you need to, added to the fact that the head is held in place by a plastic mask that is bolted to the table), and the radiation caused raw red sores throughout his mouth and throat. Even though we gave him oxycodone multiple times a day, eating, even soft foods, was torture—he’d take a bite, chew and swallow, then scream in pain. Then he’d do it again because he needed to eat. At the beginning of his treatment, he was 33.5 pounds. I think he went down to 29 pounds throughout his treatment.
I think all told, he had three surgeries, 6 overnight hospital stays, 24 weeks of treatment (that lasted 27 weeks, because several times he didn’t have high enough counts to receive treatment), 2 blood transfusions, 20 days of radiation, so many scans I’ve lost track, and countless pokes and blood draws.
For a while, Jonas’s energy was so low, especially when his blood counts tanked, but his determination helped me be strong. It was really hard to see how sick the medicines made him, and how much pain we were inflicting on him in order to give him a chance to heal and live, but it was the only way, so we did it.
Miggy: Fortunately Jonas has been cancer free for 16 months! Yay! What is life like post-cancer? Do you still have regular check ups and appointments?
Kristina: Life post-cancer is slowly returning to a semblance of normal, which is nice. The first year, he had checkups every 6 weeks, with MRI and PET/CT scans every other appointment. This year, he has checkups every 2 months, with scans every other appointment, and we’re about to move to checkups every 3 months, with scans every other appointment. If Jonas makes it to 5 years without a recurrence of the cancer, he’ll be declared cured and will only have blood work done once a year, along with a normal check up. That will be a month or two before he turns 8, if all goes well.
Miggy: What are the biggest worries you face for Jonas at this point?
Kristina: The biggest worries I face for Jonas right now are recurrence and long-term side effects. Every scan day is scary for me, because I’m always afraid they’ll tell me that the cancer is back! Also, many possible side-effects, if they show up, can take years to do so.
Currently, he’s been very lucky. The only long term side effect we know he has is that the mucus membranes in his nasal area were damaged, so colds stick around a long time because the mucus can’t move properly. He also has to have a humidifier in his room every night, or he gets nose bleeds. He also needs to use saline spray to help his nose work properly (as a side effect, I’ll take it!).
Because the radiation was aimed at his face, damage to the growth plates is possible, so his face might not grow properly. Dental issues are a probability, too. Also, learning disabilities are a possibility because of the radiation being near his brain. Those sorts of problems, if they do happen for him, won’t show up until school (he starts school in the fall). He also has to see an endocrinologist every year, until at least puberty, because the thyroid could be affected. Several of his chemo drugs could also cause sterility, and they also can cause secondary cancers.
It’s hard not knowing the long-term ramifications of his treatment. But, looking at how healthy and happy he currently is, I’m just glad he’s here to have potential problems. Much better than the alternative.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situation?
Kristina: One of my favorite was right at the beginning of Jonas’s treatment. After the surgery to de-bulk the tumor, we found out that Jonas did have a sinus infection—it just couldn’t clear up before because the tumor was blocking the sinuses. Once the tumor was out of the way, the infection cleared up. Jonas ran in to his next appointment and said “Doctor Bob! Guess what? My sinus infection is gone! Now all I have is cancer!” He was so excited about it. Also, when we met the radiation oncologist for the first time, he was asking us questions. One was something like “Is Jonas generally healthy?” Jonas gave him the side-eye and spoke very slowly and clearly. “I have cancer. It’s called Rhabdomyosarcoma. You need to give me radiation to fix it!” He clearly was not sure this was the right doctor if he thought Jonas was healthy! (Jonas practiced saying the name of his cancer until he could get it right).
Miggy: What would your advice be for those who are wondering how they can best support families going through a situation like this? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Kristina: It was so helpful when people asked if they could do specific tasks, because sometimes it was hard to call people for help otherwise. I had a friend who came over and helped me scrub all my walls when we were sanitizing the house, since Jonas’s immune system was so compromised. Other friends made meals for us on clinic days, knowing that being at the hospital wore us out and we didn’t have the energy to cook. Also, if there are siblings, it’s really nice to remember them, too. Jonas got a lot of very sweet, thoughtful gifts when he was diagnosed, and sometimes Brenna felt left out. When people acknowledged that she was affected, too, and paid attention to her as well, it really helped keep our family more balanced.
I wish people would be willing to ask questions if they are curious, rather than staring and whispering. Jonas wore a mask when we were out in public to help keep him from getting sick with secondary infections. He hated when people would just stare at him, but he loved telling them all about his treatments if they talked to him. Also, while I know people mean well, sending links about miracle cures that doctors don’t want you to know about, or about how processed foods cause cancer aren’t helpful. I think people sometimes feel helpless when they are presented with illness like this, and grasp at anything to try to make it better. But really, we’d rather have had an acknowledgement that yes, this was hard, and that they loved us and were there for us. We didn’t need them to fix the problem, just share the emotional load with us sometimes.
Miggy: What is the biggest lesson you’ve learned since going through this cancer journey?
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Kristina: I think I learned several big lessons! I learned that life is so very precious, and that you can handle a whole lot more than you ever thought you could when that’s the only option. Also, that little kids are fighters and that we can learn an awful lot from them on how to handle adversity. I also learned how to be the advocate for Jonas I needed to be to have his needs met. For example, he was willing to go along with pretty much any procedure the doctors wanted, as long as they were willing to explain to him what they were doing and the reason for it in simple, but not babyish, language. I learned that, as small as he was, he still wanted to feel in control and it was my job to help him by articulating his needs to each set of medical professionals.
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Kristina, thank you. That was wonderful. I was laughing at Jonah's exciting proclamation, "My sinus infection is gone, now all I have in cancer!" So funny and sweet. I also appreciate that you reached out to me in the first place, because while cancer isn't typically thought of as 'special needs' I've learned to expand my definition of what 'special needs' means. An illness as all consuming as cancer, certainly throws a family's life up in the air--and you had some great advice that can translate for many families going through a difficult time with one of their children. Don't forget the sibling! As much as I appreciate people showering Lamp with kindness I feel sad when her big sister stands by time and time again completely unnoticed. Such good advice for people who want to know how to help. And yes to being your child's advocate! Thanks again Kristina.
As always if you or someone you know would like to participate in the special needs spotlight series please email me, or have them email me directly at thislittlemiggy at gmail dot com.
And please email me soon! I'm in need of some new spotlights!
Have a great weekend!
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I'm sure many of you have followed the heartbreaking story of this sweet little family, tragically and suddenly losing their precious boy Ryan last Friday. His mom Jacqui blogs over at Baby Boy Bakery. Once again I'm humbled and so grateful to be a part of the online community as they (we!) rally around this family to lift them up in their time of grief. If you have the chance to blog/tweet/instagram a photo of sweet Ryan with the hashtag #redballoonsforryan as a means to show your love and support please do so. Every. Person. Matters. Especially children. Also you can check out this Go Fund link to donate and raise money for this family facing a funeral and other unplanned costs during this terrible time of grief.